Kari blogged today about her fortune to be surrounded by people who understand her family and their children with FAS (Fetal Alcohol Syndrome). I was struck by the overwhelming aloneness I feel about living this life with Dustin.
One of the main reasons I started blogging was Robert nagged me. I really didn't think I had anything to say that people would want to read (and still not so sure I do), but the reason I continued was Kari. She found me one day and left me a message that we are not alone in this struggle with FAS. Through that post I found many other blogs of families like mine. IT held my attention. It furthered discussion of our own issues. It helps in a way nothing else has. It is my best therapy.
All that being said, we are wickedly alone. We have no Personal Care Attendants like they do in Minnesota and other states. We have no other families around us that we can talk with, fret with and help to support. We have no babysitter for Dustin other than my mother. No one else can deal with him. While Kari so fortunately "has people", we do not.
I say all this not to have a bunch of comments of sympathy. I say this to say that even though I feel alone becasue of FAS, I am certain others feel alone with children of differing disabilities. Reach out to someone. Email them. Comment on their blog. Give a mother an understanding look when she is fighting her kids in the grocery store. Let them know you understand, laugh with them.
Most importantly, look at them differently. It is so easy to assume the parents are at fault for a child who is behaving badly. . . give them the benefit of the doubt. Maybe they are on their last shred of patience. Maybe they want to chuck it all. Maybe they go home and cry because they are alone in their child's disability.
I know I do sometimes. . .
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LoveLoveMissMiss
2 days ago
5 comments:
You know what Sheri, we all have our trials - like I have said many times - a different cross to bear. I understand. I can not relate exactly to what you feel, as you can not relate to exactly what I feel, but your cross is FAS and you do have your Mom and your husband to help. My cross is being single. My three kids are a daily challenge for me and no one to reinforce my disciplinary measures.
As a mother, we all know for whatever reason, children respond instantly to their fathers and rarely argue back with them and usually do what is said on the first time. Its not that way with mom, they test mom every which way. My cross is I go to bed alone every night exhausted from my challenges of the day with my kids. I do have my family nearby for my peace of mind, but raising these three kids is my job. Their dad doesn't back me. I am not whining and looking for sympathy, the same as you, I am just airing what I deal with and how it makes me feel.
We live our days the best we can and do the best we can with our kids, and you know what Sheri? Your kids and my kids, they are all going to be just fine because they got moms that love them and care.
Sheri,
Here is a list from the NOFAS website of FASD resources in Indiana-
http://www.nofas.org/resource/results.aspx?ST=14&Name=Indiana
Pretty sparse compared to some states.
But...you are a resource in Indiana for other families! You have an understanding of FASD that you can share with others. I wonder if you could put some feelers out and get something going there. Hey, find someone to sponsor it and I'll come out and do a training!
And, even though I'm like an invisible friend, I want you to know that you do have people because I feel like we've become friends. I wish you lived in our state but part of me thinks that you are exactly where you are for a reason. ~Kari
Thanks ladies!
You get me. , , apparently you are "my people"
"Reach out to someone. Email them. Comment on their blog. Give a mother an understanding look when she is fighting her kids in the grocery store. Let them know you understand, laugh with them."
You said it Sheri!
It's interesting to read your post Sheri, on this particular day when I had to take my eleven year old son (with ARND)to school to explain and apologise for some pretty crazy behaviour last Friday. I bit my tongue whilst they (sensitively) dealt with the problem but then had to plead with them to understand why my boy behaves like he does...they just don't know FASD. Here in Australia it's hardly acknowledged, and I know no other child with a diagnosis...I rely on bloggers like you and Kari to help me feel that my son and family are not alone. Keep blogging about your son Dustin; I see a little of my Seth in him.
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