Saturday, October 15, 2011


We met with a practitioner from an in-home therapy place on Wednesday with Akila, we had the meeting at school. We are desperate to find things that will help Akila and us when she comes home, to help things work so we don't end up in a bad place again. But I have to admit, and I'm not suppose to feel like this, and I'm certainly not suppose to admit it publicly, I am skeptical. Here is why...

We have done counseling/therapy with Akila in the past, and it has not helped. Generally, when you are seeking professional help, there is a reason. The reason usually is that you are in over your head, you are trying to keep your head above water when things are really rough, and you're trying to find someone who knows more than you about the problem; this is why they are called the professional, right? Well the main problem with this strategy which works really well in the majority of situations, is that it is nearly impossible to find a professional who knows more than I do about FASD. I am not saying that to sound conceited.

Usually, when you take your child to a medical doctor looking for answers, they know more about the problem than you. Zeke has been diagnosed with Chronic Hives recently. This annoying diagnosis, has been the root of the joint pain, hives, angieodema and other issues he has been having more several months. I know nothing about Chronic Hives. I have been reading up on them, and trying to, but his doctors know way more than I do about them even after I have been reading for a few months. Do they know Zeke better than I do? NO. I am a very important piece to his treatment as I know all the details about him, but I do not know more about Chronic Hives than his docs do.

I have yet to find a professional who knows more about FASD than I do, and I am not talking about my personal experience of living with FASD, which is very valuable and important as well. But I mean from an academic perspective, or knowledge perspective. I have read practically every book on FASD, even one or two which were very medical based and hard for me to understand and took me 3 times as long to read. I have been to multiple conferences and workshops on FASD. I have been told by MD's that FASD was barely skimmed when they were in med school, and for the majority of MD's, only Fetal Alcohol Syndrome (FAS) was covered, not the more dangerous and common Alcohol Related Neurodevelopmental Disorder(ARND).

A few years ago when Akila was going to a highly recommended Psychologist, I asked him if he had much experience or knowledge of FASD. He said yes, he understood it. I should have dug more before we waisted our time and money. He obviously did not understand it, or have much experience with it. He developed a very confusing (for me even) reward behavior chart (otherwise known affectionately to many of us as a sticker chart, or "stupid sticker chart" in my book). I can't remember all the details of it as I have tried to repress it, but it was something like Akila had to rate her behavior at the end of the day in a couple of categories from 1-5 and so did we, and then we had to compare our ratings, and if she was within 5 points of where we rated her, she received a sticker. At the end of the week, if she had 4 stickers, she earned a certain thing, 5 stickers a different thing of higher value, and so on. We were both confused. Needless to say, it did not work.

During these sessions with him, he also was convinced that we should be doing the typical time out system. I explained that it is well known by FASD experts that time outs are not very effective with the FASD brain. He disagreed. During one session, he tried to get Akila to take a time out when she had been rude. It was not working well. The timer could not start until she stopped talking. Finally, he had me going out into the hallway and coming back in, in order to get her to take her time out. I went back and forth a million times, feeling like an idiot as people were passing me. I was sweating by the end of the ordeal, and after over 45 minutes, he got her to take a silent 2 minute time out. He was very proud of himself and said we should be doing them at home, and that it would just take several attempts like he just did to get her to do them consistently. We never went back.

So, I was skeptical when meeting on Wednesday with our latest therapist. I still am, but there was one great thing that happened. She was personable and easy to get along with. But the thing that I felt was refreshing, was that she admitted that we knew more about FASD than she does. She admitted that she is not sure how she is going to approach this situation. Wow, a practitioner who is not full of them self and sure that they can fix all the problems. I find that this is half of the battle. Don't get me wrong, I would prefer a professional who knows more about FASD, has had tons of training in it, and just flat out "gets it". I have really only heard of one of these people in the Twin Cities though, and I don't think she is the type of person who works 1:1 with the child each week.

I have found a Psychiatrist who gets FASD, and I highly recommend her. Dr. Elizabeth Reeve with Health Partners. My friends and I have been clogging up her schedule lately. This is why I tell almost every young person that I know who is majoring in counseling, psychology or something like this, to specialize in FASD- there is a mint to be made. But more importantly, there are a ton of families like ours who are desperate to find pro's who "get it". We had a PCA who is getting her PhD in Psychology and I was hoping she would specialize in FASD, she even tried to get her internship to be at the U of M FASD clinic, but they were too slow in getting back to her. After working 1:1 with Akila, she really gets it. But I think she has realized that her area of interest might be with children, even though she was great with Akila.

So my skepticism with this newest practitioner, strike that, with this new series of therapy, doesn't have so much to do with this individual practitioner. It is more about the system. The fact that we keep training, educating and sending professionals out there who have no clue about FASD, or very few clues. I really liked this woman, I hope she is able to help out. But the fact of the matter, is that Akila will still have brain damage in the end, this part is not fixable or reversible. And if we can have someone working with her who understands this, it is half of the battle.


DynamicDuo said...

we are somewhat in the same position, we started therapy again this fall with the girls, a new therapists who from the get go was more concerned about "our" me and Matt's well being than the girls. She openly admitted that we knew more than she and that she would be asking us and referring to us for information etc.. The girls like her and if she can take some of the pressure off us, it may be worth training another professional. I think that is what we as parents will have to accept, we will have to train those that are willing to learn, that aren't stuck on themselves, so that maybe down the road - they can help out the parents/families that are just starting the journey. She has worked with FASD and DCD kids, mostly up in Ramsey Cty, transferred/started working down here toward the end of this past summer. Not to the point where I can recommend her out to others yet, but I do think its worth the attempt to get someone close by more knowledgeable.

tracy said...

I hear you sister. We have intermittently tried therapy for our kiddo with FASD and saw no positive change. I must say we did meet the best ever therapist at St. Cloud Children's Home, residential treatment. That is history now that he got kicked out of treatment, yes, arrested and kicked

You are spot on, we need professionals who "get it" not to mention family and friends who "get it."

The best part of the placement she is in right now is that you are getting professional documentation of the facts. If I've learned anything it is that when seeking services for your difficult child the powers that be will NOT connect you with services or pay for services based on parental report...whatever do we know.