question for parents?

[Lynnea]

Hey everyone,

I have a question for all the parents. You see my mom lived her life knowing that something was different with me, but not knowing what. She was told by several family members that both my mom and dad were bad parents and that they spoiled me. When really they both just knew there was something different about me and they gave me attention like I had a learning disability. Which we found out when I was 20 that I do!

My question is, do you get told at any time that you are spoiling your ACC child or that you are using bad parenting skills. And if so, how do you handle it?
-Lynnea

[larkangel]

My 10 year old daughter Larkyn has ACC, we have known since she was born. I found this site a few years ago but have never actually corresponded with anyone, just read stories.... now I'm wondering why because it already makes me feeling better talking to others who understand. I have been told that I baby her, but never bad parenting skills. It is hard to try to make others understand why she cannot ride a bike, tie her shoes, etc. I still help her bathing & most of the times dressing. She can do dress herself but she could care less if her clothes match or her shorts are pulled on crooked!! lol I admit, I do baby her some, she is my only child & her dad & I divorced when she was 1-1/2, so it has just been the 2 of us. My friends & family are very understanding... maybe its because we know just how far she has come & how much she has been through. It breaks my heart when I feel like she is being teased or feels like she doesn't belong, but we talk about it & she knows how much I love her & most importantly how much God loves her & that he made her special for a reason. As far as handling other peoples "opinions", God blessed me with being able to say "forget them, their opinion doesn't matter to me & I don't care what they think". I understand Larkyn because I am her mom. Since her birth it has been one big learning process for me & it will continue to be. I can't expect other people to understand because sometimes it is hard for me to, I just accept what God has given me & thank Him for allowing me to be one of His precious little angel's mom!! You don't know how many times over the years I have wanted to try to contact someone like Oprah, etc., to try to make a better awareness of this birth defect. I feel like we are just a very small family (ACCers) that no one really knows about unless they are directly tied to one of the families.
Bless you & your friends for making it possible for us to communicate & make friends with others who understand!!
God Bless You!!

Kim Barfield - (Larkyn's mom)

[msp123]

My mum and dad has been very supportive of my daughter my mum has her on a saturday afternoon for a few hours so we get a break and either takes her out places or just has her doing creative things like painting or has the pool out or the bouncy castle in the garden the rest of the family think she should be more disaplined and think shes spoilt

as for bad parenting i actually had this conversation with the new health visitor that ill have for my son when he's born she came out and was asking some general questions and we got on about my daughter and how my daughters old health visitor use to make me feel like a bad parent when she wasnt reaching her milstones she would be all are you sure your doing this and that with her and made me feel like i was a bad mum or wasnt doing it right to the point when i tried to get her to crawl id be crawling on my knees with her then crying my eyes out needless to say she never crawled she just bum shuffled in circles round the house lol when we went for weighing and she wasnt putting on weight she'd ask me if i was feeding her properly and i was like of cause im feeding her but she was only taking 1-2 ounces of a bottle i couldnt force feed her and when she went on solids she had this thing for storing her food in her cheeks like a hamster and she could have it their for about half a hour refusing to take anymore coz she already had a mouth full then she was like well ive never heard of babys doing that before like she didnt believe me i know its wierd but thats what she did lol

so i told the health visitor today that ill be fine if im not judged like i dont know what im doing this time round and she understood

with her being my only child for so long i think i have spoilt her a little but not too much i wasnt actually going to have any more children i didnt want any more incase my next one would have the same problems but then i got really broody and thought i dont want her to be an only child

larkangel i can totaly understand u still bathing and dressing her and i dont think its babying her i dont think i could trust my daughter to bath her self she would empty the whole contents and make a huge mess in the bathroom lol we have to litrelly keep any shampoos or shower gel high on the shelfs as for dressing my daughter doesnt care if she gets clothes from the dirty laundry basket she would still put them on or just chuck something on that doesnt go together and even have odd socks on many of time so i have to get her clothes out for her or sometimes totaly re dress her

[lauras]

Oh yeah, I have been told that I am smothering my daughter, hoovering over her. My sister in law who has known about Bethanys ACC, said that she "Was glad I was letting her go to camp."

On the other side of the coin, my mother thinks I don't help her enough. And people wonder why I am so stressed out.

[hannahsmom]

My husband and I go round and round about this, each thinking the other is using the wrong approach. I cut my daughter a fair amount of slack - especially when it comes to her trying to answer questions. If she says she doesn't know or remember, I tend to believe she doesn't. But he treats her pretty much like nothing's wrong and presses on for details in her answers. We're never sure how much she knows/understands or if she's just being neglectful. I'm not sure we'll ever be on the same page.

[lauras]

Thats a good one. my Daughter gives us the same answer for nearly everything. "I don't know" Usually if its something to do with a choice. "do you want this or that? I just say "well think on it and let me know." I try not to make a big deal of it. Pressing her we discovered just causes her stress and she shuts down.

If she gets agitated I drop it unless it is a major thing. I know its hard to come to a comprmise on raising children. My husband and I struggle with the same thing. He tends to be harsher me more lenient.

[aracelibriesmom]

Although we didnt know about Briannas ACC until she was 5 1/2 months old, I have always gotten the "bad parenting" acusations from my mother in law. They think the ACC is all in my head even though Brianna is developmentally delayed, will be two next month and isnt talking or walking just learned to crawl... they think that I treat her different and that I should treat her like a "normal" (i dont like the word normal i prefer "typical") child so that she can be a "normal" child. Its a long story. Just know that its due to peoples ignorance and k now your mommy wasnt alone we know what she went through

araceli
briannas mommy

[Lynnea]

Thank you all for all your great responses. It actually reminded me of some conversations I had with friends when I started telling others about my ACC. They told me it was all in my head and I would say "actually thats the point...it's not" and then I would continue to explain ACC to them and they would finally be like "oh..."

Theres also some similarities between myself and some of your children. Growing up I was the same way. I would say I dont know and things like that. And my mom not realizing about my ACC would push me, until I would get frustrated and upset. Then after we found out about my ACC she said she realized that when I would get upset it wouldnt be at her for trying to push me because even then I knew it was because she loved me. I would get upset at myself because I couldnt do what she wanted me to do or couldnt answer the question the way she prefered (by giving an answer besides I dont know)

I had the opposite upbringing my mother was the one that was harder on me. She is a retired special needs teacher (she just retired in June) and my dad worked with Special needs adults. They both knew how to handle my "differences" and other family members just thought they were spoiling me because my parents adored me. They just wanted me to have as normal a life as possible. So they gave me an amazing gift. And even today my grandmother still thinks I was spoiled because I was an only child. Mom and I just ignore what people say anymore because we realize we know the truth and thats what matters.

I'm glad she does have people that understand what she went through and sometimes still goes through. I love this ACC family. What a blessing.

[aracelibriesmom]

ACC family, that is cute Lynnea!
We love that you have started this awareness site and board. Thanks!

[matthewsmom]

Lynnea,

*seconds Araceli's love of this Board*

I thank you from the bottom of my heart for creating this Message Board, for providing a place of support and for helping to create greater awareness of Agenesis of the Corpus Callosum and corpus callosum disorders.

Thank you.

Sandie *Mom to 15 year old Matthew with complete ACC*