Not quite as "quippy" as my husband, but I figured "Hey, everybody else is doing it" and "Yes, mom, I would jump off a bridge. . . "
Sunday, July 16, 2006
Sacrifices . . .
Sacrifice. People talk about sacrifices. They talk about sacrificing new cars so their children can attend private schools. They talk about sacrificing while they finish college. We have a whole different kind of sacrifice in our daily lives. Not a worse sacrifice or a greater sacrifice, just different. . .
Our family has sacrificed friendships and "normal" family life in order to adopt a child with special needs. Our child's special need happens not to be an outward need. Sometimes I think it would be easier if Dustin was in a wheelchair, or had an obvious physical disability, but our child has a hidden disability. Our child has Fetal Alcohol Syndrome. Our sacrifice has been friendships.
Robert and I have no one to "hang out" with as a family. No matter what we say to try to explain to others about Dustin and his disability, we are looked at as horrible and mean parents. People don't understand what we go through behind closed doors. People have no idea how a little ignoring of a behavior in public will affect our entire family life at home for days. We discipline Dusitn in public. We are firm and strict, we have to be. People give us a chance for awhile, they understand a little, then they avoid us like the plague. We are looked at like unbending and deliberately mean. New neighbors question how we can be so harsh and seemingly cruel. We try to explain his disorder, they say they understand, but you can tell they don't. Old neighbors understand sometimes. You explain what the therapists say, what new techniques you are using, but they just don't get it . . .they don't live it. I feel so terribly alone.
Heres an example . . . Dustin happens to be very fixated on animals at the time. He WILL hurt and animal if given the opportunity. He won't mean it . . . it will begin with kindness, the animal will try to get away, and the cruelty begins. He is very capable of killing an animal. He will feel no remorse. There will be a very good reason in his head as to why he choked that animal. Due to this latest fixation, he is not allowed to touch ANY animal. We have completely taken away that privelege so that maybe that fixation will disapate, AND maybe we can spare that trauma from happening. People don't understand that, people see us as heartless. They see US being cruel. I know what he is capable of, I want to spare everyone that possibilty, especially him.
Our sacrifice? We have a very difficult time going out to eat. We cannot go to the grocery as a family. We haven't been in a church service as a family in MONTHS. We don't have a babysitter to watch the kids with the exception of my mother. We don't get invited to cook-outs, walks, hikes, bike rides, or family outtings with others. We have NO friends, everyone has abandoned us. We are looked at as the problem when we are simply dealing with what we have been dealt as best as we know how.
What about positivity Sheri? I have been trying to be positive lately. It is my hope that my positivity can further help our family deal with our daily issues. Why am I then whining about my trials and issues here. Because I can, because I need to, because I am sad, because this is the only palce I can say it. I hope that I can release it here, maybe make others aware of what families with special needs children deal with, and maybe, just maybe, I can get over it. Maybe I can no longer care about the looks, the questions and all the explanations that I feel I am obligated to give. Maybe I can overlook that fact that people leave when our family joins in on something. Maybe I can avoid the stigma that I feel when I discipline my child in public or in my own yard because I, and I alone, know what's best for him. You dont walk in my shoes, you can't possibly know what I deal with. I have to understand that I don't walk in other's shoes as well, and I have to be more tolerant and less demanding as well.
I'm tired of feeling as though I am on high alert and I have to have explanations ready for anyone that asks. I'm tired of being the pariah. I'm sad we don't get asked to do things with other families, it breaks my heart, not just for me, but for my children as well. We as parents are the ones that struggle dailywith this we could use support and encouragemwnt instead we are met with "knowing" looks and fake understanding. I'm tired of always being scrutinized. I am a family dealing with someone elses mistake. . . embrace me. Welcome me. Love me AND my child. I cannot force you to deal with my child. I have to find those who want to do it.
All of that being said. . . do I regret adopting this child and taking on the responsibilty? NO. Do I wish this world held something better for him and all of us. Absolutelty, but I will deal with the path I chose and make it the best path I can give him.
Apparently we will do it alone, we have made our choice.