I have been hoping to find other parents that blog about Fetal
Alcohol Syndrome (FAS) so that I could learn from their experiences. I
love to share what has worked and has not worked with my kids so others might
benefit from my experiences, as well. It can save a lot of time when you
are not “reinventing the wheel” and when many minds are looking at the same
problems, there are often many solutions offered that one person alone might
not have thought to try. At the very least, I thought finding other
bloggers who are willing to share, would help me to see that others are
surviving FAS and I will too. Encouragement is what I need the most to
keep on doing what needs to be done. Sydney is a lot of work and I
sometimes get discouraged. Last night I found a blog called “When Rain
Hurts” written by the mother of a boy named Peter, adopted from Russia. He
has FAS and his parents have been through far more than we have. She is a
brilliant writer and her blog is going to be published as a book. The link
is http://whenrainhurts.wordpress.com/
I found Sydney had many things in common with Peter and I have
many things in common with his mother. She said she was left feeling
inadequate after reading many books about autism and adoption. I am often
left wondering if some authors are being truly honest when they say they have
completely accepted what they cannot change or that they embrace their child’s
disability and would not change anything. Then I suffer extreme guilt
because I CANNOT feel that way about my own children and their
disabilities. I do not embrace autism or ADHD or FAS. I HATE autism,
ADHD and FAS. I would do almost ANYTHING to change those things about my
children and we have worked hard to minimize the symptoms of these disabilities. We
spend a lot of money on medications that help and a lot of time on
interventions. I am not bitter but I hate the disabilities my
children have. I can see the people they would have been without their
disabilities and the adults they will become because of their
disabilities. It is frightening to think about the things they will
struggle with, the friends they will and will not have, and the kind of care
they will receive when I can no longer care for them.
I have read many books about autism and met many parents of
children with autism in the past few years. Several of them say that they
would change nothing about their child because the disability is part of what
makes them who they are. I have a hard time understanding that. I
would do anything, give anything, or give up everything if I could “cure”
Tate’s autism or Sydney’s FAS. One mother, who told me she would not
eliminate her son’s autism even if she could do so, had her son enrolled in a
very expensive discrete trial program at the time. Did she want to
minimize the disability that she had just told me she cherished as part of who
her son was? I had to bite my tongue hard that time. See my post called: Celebrate Autism? for more about this.
Once in a while people ask me if I would do it all over
again. Would I still adopt Sydney? Honestly, I think I would. I
think I would because I love her with all my heart. I think I would
because I cannot bear to think about where she would be or what she would be
doing if she were still in Russia. I think I would because she has a soul
and I want to teach her about God and His plan so she can go to Heaven. I fear
that someday my answer will change. I've read that thirty percent of people in
prison had birth mothers who drank. That scares me. If a person has brain
damage that keeps them from being able to make good decisions, how are they to
obey laws? If a person has little or no impulse control, how can they be kept
safe?
No one has ever asked me the same question about Tate,
perhaps because he is not adopted. If I could turn back the clock, would I
still have planned one more baby, the year before Tate was born? No, I
would not have. There, I said it. I would not have conceived a baby,
knowing he would have autism. Autism has drained me emotionally, mentally,
physically, and financially. Having said that and before the hate mail
starts pouring in: I adore Tate. My world revolves around Tate. I am
not a patient person, but I almost never lose my patience with Tate. He
brings out the best in me. He gives me a lot of happiness and he has taught me
a lot of things. Although I have been drained in many ways, Tate and
autism have helped me to grow spiritually. I see things much differently
than I used to and I am a much better person than I was before Tate was
born. The main reason I would not have purposely conceived a baby knowing
he would have autism doesn’t have as much to do about what autism has done to
me, as it has to do with what autism has done to Tate. I see him struggle
to fit in and know he will never be able to understand the world around
him.
I’ve said it before and I will say it again: The phrase
“Everything happens for a reason” is one of the most ridiculous things I have
ever heard. God does not give people autism and God does not cause women
to drink so their babies will be born with a lifelong handicap. That whole
idea is absurd. It is true that we can make the best of a bad situation
and grow stronger because of it but there is no divine reason a child is born
with a handicap. (My "rule" #11.)
None of the above thoughts or feelings really matters in the
end. Both kids are here. Both kids are mine. Both kids are
handicapped. Both kids are loved. Both kids bring me and others so much
joy. I really do love my life.
We have seen so many good things happening. We didn’t know
how much progress Sydney could make and she has already overcome some of the
problem behaviors we worried the most about. Something that concerned us a
lot when Sydney was a toddler was her inability to differentiate between
family/friends and strangers. She was completely comfortable in the
presence of a crowd of unfamiliar faces and she sought the attention of
complete strangers. Long after she should have bonded with us, she would
reach for people in stores, wanting to be held. I knew if someone had
picked her up and walked away with her she would have never looked
back. She would not have missed us at all. She did not seem to
understand where she belonged or that she needed me. Anyone could step in
and take care of her needs and she would not have noticed her mother was not
around. I’m not sure when she finally understood or cared who she was
with. It probably happened very gradually and I was too busy worrying to
notice. In my opinion, her attachment took far longer than it should have
but it finally has happened. She is too trusting still but she does now
have the same kind of reactions my other children would have had in new
settings or around unfamiliar faces. She even acts shy occasionally and
that is not something we would have seen when she was a toddler or a preschooler.
I’ll end with a couple of my favorite Sydney-isms from this
week. On the way to school, Sydney saw a dog beside the road. She said
"Mom, on your way back home, stop and ask that dog what it is doing."
(Yes, she was serious.) The same morning, right before we left home she
asked her dad "How much is 36 minus 6?" He said "30".
Sydney replied "Nope 240. That one must be too hard for you
Dad."
If you enjoyed this post and would like to see a more current one about these two great kids, click this link: Mommies Don't Give Their Kids Away.
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I like you ,would change it if we could. Even if it meant they were not ours,,,,I would give any thing for them to be OK.
ReplyDeleteSpoken like a parent who loves their child more than they love themselves. Thanks for the comment.
DeleteYou just want what is best for your kids. And you want to give them a happy life on top of that free of extra worries and burdens. And most importantly you want to know they will survive without you. Having never been in your shoes or anything that even slightly resembles what you deal with, it all seems perfectly natural just like any other mom. Just because Sydney and Tate are "special needs" does not make them any less of who they are and how they impact the world in ways you and they will never know. They are truly gifts. Gifts that might require a determination to work with, but gifts nonetheless.
ReplyDeleteThat was eloquently said. Thank you. I appreciate your insight and your encouragement.
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