Friday, February 10, 2012

Things not to say

Those of us who are parenting children with brain damage, have a tough job. I admit it. It is hard, every day, every minute. There are things that make it easier, or more bearable I should say. Number one for me is my faith in the Lord and knowledge in His purpose in my life. That is the most important thing, that helps me keep my head above water.

There are several other things that help me not commit myself to the loony bin. A great husband who has my back. Hanging out with other moms who are living similar lives. Hanging out with friends of typical kids so I can pretend to be normal once in awhile. My blog friends and on-line supporters. Exercising, which I need to start doing again regularly. The occasional chocolate binge (too occasional). Random people who offer to help from time to time (a friend who has taken Akila for several hours on a Saturday, a friend who took her for an overnight, a friend who sent their housecleaner to my house once, etc.). I am so appreciative of all the support we receive. We would be emotionally wrecked without the support.


There are also the people, who are almost all well intended, who say things that are just not helpful. There is often a lot of blame behind their words, even if they did not intend it to come off this way. What people need to know, is that most of us parenting challenging kids, have tried everything. There are very few things that actually work with a child with FASD, and that is the honest truth. I don't want to scare people off, but I want you to think about the things that you say to a parent like me before you say it.

Here is an example of some of the things that can be really frustrating:
  • After telling someone about Akila's physical aggression, and going quite in depth about it and all that we have tried, I received an email asking me if I remind her that hitting and kicking will result in a loss of privileges. Really? Really???
  • After telling someone about some behavior or something that Akila did, they tell me that it is normal and that their child did that once also. Really? Really? Big difference.
  • After telling someone that Akila has very ashy skin and refuses to put lotion on and I am kind of over battling with her, they suggest that I get her a nice smelling lotion or lotion with glitters. Yeah, cuz I have never thought of that or tried that. Not to mention, it is not about the lotion, or being unique with the lotion. She is going to fight it no matter what.
  • My personal fav: Being told to pray to caste out the demons and stronghold that the devil has over her.
  • You got the bad luck of the draw. Really? Really?? Would you say that to someone who birthed a child with a disability? (have heard that one monthly, just this morning from our dentist)

I don't write these to make any of you feel bad. And I certainly don't mean for any of you to have to feel like you need to be soooo careful when talking to mom's like me. I'm also not saying that I don't value your advise or support. All I am saying, is please think about some of the things you say, or the advise you give. I also admit that I am guilty of doing and saying things like I have listed above, especially 6 years ago and prior to that.

So friends, feel free to post comments of other "things not to say" or things that drive you nuts when people say them. It is important to try to share these things as sometimes, they can even sting when we receive them, especially when you are new to this life, or are just figuring it out. I pretty much laugh a lot of these things off now-a-days. Julie and Dorothy and I have had a great time lately whenever one of us says something that one of our kids have done that is wacky, one of us is sure to ask if the mom has reminded the child that the behavior could result in a loss of privileges if they do it again. Cuz that will stop them.


DynamicDuo said...

that's just typical teenager behavior - they'll out grow it..., really you can outgrow brain damage now?
Did you tell them that sneaking out in the middle of the night, in the winter, in the middle of nowhere is dangerous? Nope - we wouldn't think to tell them that.
I have lots more....

Anonymous said...

Cheers DynamicDuo....we got "he'll outgrow it" mean he'll outgrow eating toilet paper, dust balls, sock elastic??? after he's six?....and what about potty training? at age 6 I think there's something wrong here :) all time favorite "stop doing foster care...just stop" because it's just a job right??? It is hard but we aren't a foster family because it's easy my friends. I love your honesty with the realities of being a whole family living with FASD. THANK YOU!

Anonymous said...

Cast out demons? Really?!

You are much more tolerant than I - at least you give these people the benefit of being well meaning. I just think that's plain old know-it-all and bossy!!

After we got ShortPants, I actually called my best friend and apologized for anything I might have done in the past (when she had kids and I didn't) that made her job harder. It's amazing how much better you understand when you've been there yourself - everyone else should just be wise and keep their opinions to themselves!

brenkachicka said...

"He behaved like a perfect gentleman at my house! Maybe it's something in the way I do things vs. the way you do things"
HAHAHAHAHA!!! Maybe it's because he only spent THREE HOURS at your house, and when he's with me, LIVING with me, he knows he can trust me to stick with him. He must charm you at your house so you will like him.

Anonymous said...

Pray to cast out demons?
Did that suggestion come from a time traveller from the Middle Ages?

Jane said...

We tried to use time-outs for a long time. Nothing doing.

Behavior charts and stickers used to work somewhat, when Toots was younger. Not so now.

I pray, but I don't look to have demons cast out. On the other hand, if casting out demons is comforting to some families, I'm all for it. Just don't try to foist it on others.

Kari said...

We had a foster child who had a severe attachment disorder and FASD. This child was CHARMING for the respite care providers and they kept telling front of this child... how wonderful this child was at their house. It wasn't until this child had been there several times and they openly mentioned adoption that this child smeared feces all over their walls. I wanted to high-five the kid. (But I didn't. Wasn't sure how clean those hands were.) ~Kari

Kelizah said...

Have to jump in here!

My faves are that most people who meet me for the first time say "Now who are you?" I of course say...I am her mom. Oh.."I thought you were the social worker"/

I have heard the typical "teen" stuff more times than I can count. Wasn't aware that "typical" teens ended up in psych hospitalization 3 times in 6 months.

From our social worker (that we eventually fired) during a team meeting "This is nothing, I go to meetings all the time that are worse than this. (after my 16 year old daughter fell onto the floor and starting moaning and writhing around in the middle of the meeting)

Another favorite is from a dear friend (but one who doesn't get it). She wanted, every time our daughter was in the psych ward, to "visit" and walk around the psych floor. She wanted to "cheer" her up. The locked door to the ward and the constant presence of staff didn't seem to help her understand the seriousness of her manic depression.

Another friend (who also doesn't get it) "Is she over her clepto phase yet?"

brenkachicka said...

I just got another one! Just now on the phone from my dear Auntie! She said, "you gotta sit down and talk with those kids about just what you expect. They are old enough to be doing more."

GG said...

A mile in your moccasins would be a very harsh learning experience for most of us. God watch over your family and help you in your journey. Thanks for the education, Barb! What kind of things do people say which have the opposite effect?

Donut Diva said...

I got tons.
'Have you tried spanking her. I just think she needs a good beating.'

'Maybe you should think of letting her Grandparents raise her since she does so well there when she visits.' and that one came from my sister so you want to talk about painful comment!

Anonymous said...

I just found your blog and wanted to thank you for your honesty in writing about all of this. This post really hit me because I get this all the time and it makes me so frustrated.

I get things like "That's normal preschooler behavior... my kids have done that before" and "She does just fine at my house... maybe you need to work on your 'evil eye' (my family thinks that I am just not firm enough in my parenting)."
One of the most frustrating ones was when I was concerned about my un-potty trained daughter who was about to enter Kindergarten and I was told that "Her teacher REALLY isn't going to like that... you REALLY need to do something about it." Really?!?

tracy said...

"What? They don't outgrow FASD?"

"My kids do that too." NOT the same!

When my FASD kid routinely abused his brother they would say, "It's just sibling rivialry," but now it is "just" serious PTSD for the brother!!!

"He will learn to respect authority sooner or later."

We are told we either punish too much or too little.

"If you would just take away everything in his room except a mattress and a blanket he will figure it out."

"Have you tried....?" YES!!

The mental health crisis people asked us if we have ever tried using sticker charts! Really, you get paid for this?

and last but not least....

"His IQ is too high for DD services."

PurlingPenny said...

I've just found your blog tonight, and I'm reading my life! As our daughter is now 15, you can imagine that I could write a book just filled with idiotic statements from people without a clue. Choises I make in parenting her are always being questioned, how I speak to her is judged, all out of ignorance. I'm extremely frustrated that I have to constantly educate educators, who are always telling me, she needs to manage her time better..... (what is time?) if she would just study more ( like five hours a night isn't enough.. she has memory issues!!) and on and on it goes. I think the latest pearl was "you know God can heal her"..... yes indeed I do know nothing is impossible with God, but until He does that, I have to equip her for life. He's entrusted her to my care, and I'm ever so thankful He has.