Friday, November 4, 2011

Kind, firm & consistent

I had mentioned in this post that I was going to write about a report that was done by an OT at the crisis home. I'm finally ready.

Now, the main reason I can give this lady some slack, is that she was not able to interview us, so it is harder to get the full view of the situation. But even considering this, she has several false things in the report. When we did the intake at the crisis home, we brought a stack of paperwork, and were interviewed. I have looked through the paperwork we gave, and am not sure where this info is coming from.

One really interesting mistake, is that the report says "In addition, she has a past diagnosis of Alcohol Related Neurodevelopmental Disorder (ARND) prior to her diagnosis of FAS." Interesting, since Akila has never been diagnosed with FAS. But OK, maybe a staff told her that. She also states that there are conflicting reports as to whether her siblings are biological siblings or not. Again, maybe the staff were confused on this one. No big deal. She also stated that "reports indicate that Akila had prenatal exposure to cocaiine and alcohol." It was heroine, but doesn't really matter I guess.

As I read further in the report, what bothered me were several subtle phrases that basically put the blame on us as parents. There is a phrase that says, "The kind, firm consistency seems to be effective in order to handle her acting out behaviors". This statement follows an area talking about how her aggressive behaviors have diminished. OK, great advise. If only we would be more kind, firm and consistent, all our issues would diminish. Thanks. I've got to write that one down on the fridge so I remind myself of it hourly. Kind, firm and consistent.

It was also reported to the OT, that "Akila has overtly sexual behaviors and has reportedly sought out adult sexual sites on the Internet." This is true, we made sure the staff knew about this so when they brought Akila to the library for outings, they would then monitor her computer use. The next phrase, is yet another subtle message; "It is not clear where her initial exposure to this occurred". Later on in the report, she states again that Akila "has a history of sexual behaviors far younger than that which is expected and it is unclear how she was exposed or learned of such behaviors." Then, "It is highly recommended that access be limited to any inappropriate Internet sites as this puts her and others at risk." Oh, that's what we should do, "limit her access to these sites." Good to know. That isn't why we told the staff to control this one, and to watch her like a hawk at the library (since public libraries don't have controls on the computer as it abuses our free speach- barf!). Kind, firm and consistent- I must keep reminding myself. I also like the "limit" her access, instead of "deny" it, or something like that. Limited exposure to that inappropriate stuff is OK, right?

I am sure that this OT did not mean anything by these few phrases that I felt annoyed by. The problem, is that we as parents of FASD kids hear these things over and over and over by a variety of professionals. Sometimes more subtle, and often not at all subtle. I know these professionals don't necessarily mean it in the way that it comes off, but I am sure that some of them do. I think that this OT should have gone the extra step and called us, especially to clarify some of the things that she knew were conflicting. However, I still think she would have had some of these subtle messages.

When I did the training earlier this week with the counseling center staff, one of the things I listed as a stressor for marriages, is the blame and judgement factor that we as parents always feel. It is often a very deflating feeling to consistently get this message. You can't help but sometimes really start to question what you are doing, and if you should be doing this at all.

Somebody put a comment at the end of the post I mentioned earlier in the first sentence. In that earlier post, I wrote about how the OT report annoyed. Here is what an anonymous commenter posted, "Pride sucks. Get over it Barb, and receive the points of views. In order to see a gem shine, it has to go through the process. " While I understand what he/she is saying, I don't think that they understand what my point is.

Yes, pride does suck. But my point is that I have my head between my legs right now. We are so at a loss for how to parent Akila, how to deal with her aggressiveness, how to deal with her anger, that we have agreed to have her in a crisis home. We are basically saying that we are in over our heads and need help. That is why I requested an OT evaluation. I don't know what to do, and I am asking for help. Not sure there is a lot of pride in that.

I will totally take some of her points from this OT report to heart, and move on with some of her recommendations. What my main point here is that the professionals need to be careful in their language choices, in the subtle messages that are hidden behind some of their words, so they can empower us parents instead of make us feel more guilty than we already do. What I guess I am saying, is that the professionals need to be kind, firm and consistent.


Blessed said...

Barb, it isn't just you being paranoid or too sensitive--I would have read the exact same things into those words, and been peeved. And the whole porn thing--SCARY!!!! What they are taking from it regarding your parenting, that is! Ugh.

dorothy said...

Deleated my entire raging comment because some things should only be spoken at the Kitty Kat Club between friends.....grr to the comments both blog and OT!

Kari said...

When a child has behavior problems the parents are guilty until proven innocent. Most people will never understand and just when I think I've fully accepted that, I get hit with something like what you read in this report. I'm sorry, Barb. You are a great mom and your commitment to Akila is strong and from a place of deep love. The ones who matter most know that. ♥ Kari

Shelley Davis said...

Oh this is my first visit to your blog. Barb I feel like I have found a kindred spirit in you. I am the mother of 3 adopted kids with FASD. One is 20 and two are 6 years old. I might add that we have 8 children the oldest being 32. So even with all my success at parenting I find myself feeling a failure thank you to outside judgements by professionals, family, friends and strangers in public places at times when parenting my kids with FASD.

Thank you for articulating what I feel in many situations. I look forward to getting to read more.
Hang in there and know that you are not alone, even though it feels that way at times.


AKBrady said...

Agree with Kari. As parents of a child with Klinefelter's Syndrome and Asperger Syndrome (who is consistently sexually inappropriate), I cannot tell you how many times I have been asked, interviewed, and pressed to "confess" as to how my then-14-year-old son had "access" to such behavior. "Was he ever sexually abused?" Huh???? Geez. Yes, pride does suck, but so does parenting these kids in front of a wide-open audience of a misunderstanding society, sometimes.

AKBrady said...

Oh, and I SO wish I could come to the Kitty Cat Club!

Anonymous said...

i follow your blog regularly and while i have limited direct experience working with kids who have these type behaviors, I am interested in the issues that sometimes accompany adopted kids. i just wanted to say that i feel your frustration. Also, this sort of thing happens way too often. I am an RN and work with adults who have early dementia, alzheimer disease and other cognitive issues. I have seen similar reports related to my patients' behaviors-the subtle "blame" type comments, and "easy answers". I often think that the staff writing these reports (OT, MD or whoever it may be) would realize how useless and stupid these comments were if they were to spend a day or two with the patients like the family or front line staff do. The best reports we got for our patients was from a Dr who actually WAS a front line staff person before he became a doctor. He was so practical and did not give these stupid "easy solutions". I am thinking of you and your family as you go through this difficult time. I can tell that you are a compassionate, intelligent, reasonable mom who is doing all that can be done for your daughter and family.

Anonymous said...

I am so glad I read your post. I am a professional who has written countless reports. I am so sorry that the report you received made you feel this way. The job of the professional is to support and advocate for the family and the child, not leave them feeling weaker.

I have also written those statements that seem so obvious. I write them because I feel there is someone else on the team - a doctor, teacher, another therapists, or an aide - that needed to be educated. I have to admit that I didn't realize that the parents would think that I thought THEY were incompetent and that I was directing it at them. I appreciate this feedback - I will make sure I let parents know that the recommendations in reports are not directed only at them, that instead I am trying to educate all the people who work with their child, some of whom may not know as much as they do. Thank you for the insight.

Anonymous said...

One more thing from the professional: The OT really should have called and discussed the report with you. I always do that to verify information that I have received from other professionals, and to make sure that everything in the report is clear. If you feel up to it, call the OT and ask that the mistakes be corrected so that another professional does not copy them from the OT's report. Best wishes to you and your family.

Anonymous said...

Kind, firm and anything else is our goal?? We know our kids, we love our kids. I admit a couple of years ago I 'understood' arnd to be different than the hands/heart on training that my 3 kids have given me. I also see parents with 'difficult' children with different eyes. Thank you for your honesty,willingness to share aand just being there.