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.

6 comments:

CoffeeBigPlz said...

ouch.
but that said.


I SOOOO know how you feel and I have a so called "fairly normal" child with "only ADHD" We are under instructions from our Pastor to have dates with one another without our son, yet he does not understand why we can not get a sitter so we can not go to dinner and a movie. I tell him it would cost more than dinner and the movie combined. He asked about my family, I tell him they are overtaxed due to my school. He tells me it is once a month. come on....

Hurts doesn't it.

It's like you are supposed to be a part of "Gods family" but where in the heck is "God's family" when you need a hand. pointing the finger when you get a divorce? Yep! helping you when you need to connect with you hubby once a month? no.

I am so sorry babe.
really from my heart.
I feel ya'

Sheri said...

I must say, our church does have a program to watch our special needs child once a month so we can have "couple time" It's SUPER.

I want "family time" with others too.

Thanks Coffee, you rock!

John Good said...

Sheri,

I obviously can't claim to understand your situation, other than what Robert has told me, as I don't actually live in it.
That being said, I can relate to looks and stares over public discipline, and I am often considered too strict. And Jody trends the other way at times. I could make a long story of this, but not the place. =)
We would love to get together with your family sometime, even if it's just having you over for a cookout or something. Robert's told me quite a few tales of your experiences, but it would be nice to get us all together and share in person.

FAScinated said...

I've been where you are today, Sheri. I've felt those same feelings and I've cried...a lot. Thankfully we have a group of friends in our area with kids like ours. I don't know what I would do without them. I wish you lived here! Have you joined FASlink yet? (www.faslink.org)

Some days it just helps to write and to cry. I wrote the following one day when I was really down...
~Kari


When a child is born with a visible disability
the hands of the community are extended to the family
offering assistance and comfort.

The hands help to prepare a way for the child
and they applaud as he reaches goals and milestones.
The hands touch the shoulders of the parents
and convey words of encouragement and praise
for the extraordinary care they have given.

When the family grows weary
the hands are there to raise them up.
In the evening the hands are folded in prayer for the family
and the family feels their warmth and strength.

When a child is born with Fetal Alcohol Spectrum Disorder
the hands of the community are also extended,
but it is not assistance that they offer-
for their fingers are pointed in blame.

The child grows and reaches milestones
but is rarely applauded-
the fingers point only to his behaviors.
The hands surrounding the parents convey words
that are harsh and full of criticism.
The hands are used to cover the words
that slip from mouth to ear in the community.

The family grows weary.
In the evening the hands attempt to fold in prayer
but the fingers still point in blame
and the family feels alone.

Laura said...

Sheri, I can't believe that people are like that. Maybe it's because I don't have kids. But I love all my friends regardless, and I do have friends with kids that are a challenge...that doesn't make me visit any less. I know what to expect.

Don't ever feel bad about the decision you made. Your son is a blessing! Your whole family is!

Sheri said...

y'all made me cry. I felt like wallowing in my self pity today. Thanks for endulging me.

Thanks for the kind words and encouragement. I sooooo needed that today!

This is why I blog