Adult FASD Provider Network

There is good stuff going on behind the scenes in the FASD world. I was at a meeting yesterday that is a group of people called the Adult FASD Provider Network that a man has organized. There were people from the Hennepin County Public Defenders office, Ramsey County, several social service organizations who work with adults in treatment and counseling roles, MOFAS, and parents. If you have some ideas of other organizations or people who could sit at the table, let me know.

The group is going to try to address some issues that adults with FASD face, like the major lack of diagnostic clinics, transition issues, facilitate training for service providers, networking opportunities for providers, develop a screening that providers can use and several other areas. It was a great meeting, full of people who are passionate about FASD and the people who are impacted by it.

Why am I on it? Because in less than 6 years, Akila will be a legal adult, and that scares the crap out of me. It is hard enough to get her services as a child with brain damage and issues, let alone when she is a legal adult who looks totally "normal", but is still making dumb mistakes.

I am very thankful that there are some people who are working on organizing things like this since there is such a need.

Abstract vs. concrete

I picked Akila up from an after school program yesterday so I could get her to the crisis home earlier than normal. They were having their Halloween party at the metro office and Akila wanted to go. She was in a good mood, happy to see me. We were walking down the hall and she showed me she had a big piece of tag board and said she needed to work on a project for tomorrow. I said, "Oh, you have homework, cool. You can work on it after the Halloween party." She very angrily yelled at me "I don't have homework STUPID, I have a project!!!" I said calmly, "Oh cool, you have a project." She then called me an idiot and several other names, had a horrible scowl on her face, and was mad the rest of the time I was with her.

I wasn't bothered that she was upset that I used the term homework and she was stuck on a project, not knowing that if she is working on the project at home it then falls under the umbrella of homework. We work hard to try not to use abstract concepts with Akila as we know that these kind of terms are hard for FASD kids to understand and that they can get stuck on an abstract term. I did ask her to try again and told her a better way of letting me know it was a project was to say CALMLY, "No mom, it is a project not homework." I told her that this would have helped me to better understand what I had said that was wrong instead of yelling and calling names. She just got more mad and called me more names, I will not type them.

The entire ride to the crisis home, she was whining/sobbing/complaining. What is a bummer, is that this is just how she was all summer, it is like she is mad at the world. Nothing makes her happy. She will find the piddliest thing to obsess on and be mad about. I think the honeymoon is over at the crisis home. This is partly a med thing, but it is more her being comfortable and letting it all out.

It is a bummer. A few weeks ago, I was looking forward hanging out with her as she was so enjoyable. Not anymore. She is now whining and complaining the whole time. When she calls, 75% of the time all she does is complain and whine. It is so nice to just be able to hang up when she gets rude and elevated on the phone, a nice aspect of this bit of respite.

Today, I picked her up from school to go to a Dr. appt. In the van, before she got to her state of anger, she was telling me that she saw Zeke at school today. She was actually very cute, saying that he is a "precious brother" and talking about her love for him. Then she was calling him her little tootsie roll because he is brown like a tootsie roll. Very cute, for a few minutes. Then the anger came. We are increasing her new med to see if it helps at all. I am hopeful, but have my eyes wide open.

Taxi problems

School transportation for Akila to the crisis home, has been a challenge. The only option we have basically been given is to have Akila taken to and from school in a taxi so this is what has been happening. Last night Akila was complaining to me (which is about all she does lately) about the taxi driver telling her to shut up. I asked her what she had done or said beforehand; she said nothing. I said she had to have been saying something for him to tell her to shut up. She then said she was talking to herself. I asked her what she was saying to herself. She was quiet, then said she was just talking about school.

FASD kiddos take things so literally. She may have been talking to herself, but was telling herself that the taxi driver was an ugly stupid idiot or something like that. I could tell by the fact that it took her time to answer me, that she wasn't being truthful. Well lo and behold, this morning I got a call and an email that the taxi company is complaining about Akila and that she has been not putting her seat belt on, or taking it off while they drive and being rude to the drivers. The behavior specialist had Akila in his office.

I got on the phone with her and told her that she is to put her seat belt on right away, get a book out, and read it during the ride and to remain quiet. She agreed, but that in no way means she will do it. Maybe the taxi driver should do a reward chart, I should mention that idea!!! ;)

Reward charts

I was at a meeting today in our county and it was full of FASD interested people. There was an expert panel on the topic, there were probably 30ish people there and 4-5 parents. The experts were talking about reward charts, putting marbles in a jar and you get an ice cream cone was an example.

One parent shared her experience with reward charts and the fact that they are not very effective in the homes, but work better in schools or programs. She went on for a little bit. The other parents and I were vehemently shaking our heads. I agreed and said that I want to throw up when a provider mentions doing a reward chart.

I also shared that when Akila was in 1st, 2nd, even 3rd grade, we had more success with the reward chart, but now it is not at all effective. All of the parents totally agreed, it was an interesting moment, one that felt good. Not because we were telling the experts off. Not because we are right and they are wrong. Not because I think the experts ideas are dumb or invaluable. But because we ALL agreed and had the same experience.

So many times, you wonder if you are the only one feeling a certain way, or if you are the only one willing to at least vocalize something. It was affirming to hear from other parents, who I have never met or spoken with before, that they have had the same experience. Sometimes I wonder if I am just being lazy. Truth is, reward charts take time, especially some of them. But, I do know that if they worked, I would take the time and do them!

It is like a friend I have who swears that when she gets calcium/magnesium tablets into her challenging son, he behaves perfectly. But she can't seem to remember to get it into him throughout the day (she says she needs to give it to him every 4 hrs or so). Well I can guarantee, if these tablets improved Akila's behavior, I would have a digital watch set every 4 hours and she would get those tablets. It is like the meds that she is on. I know they help her behaviors, and we are militant about getting them into her.

There is great relief when hanging out with other parents with the same experiences, or even similar experiences. It was great to be on the same page with them regarding reward charts!

Ups & downs

Akila has had a week of ups and downs. The week started out really rough with the restraint and putting a gash on a staff person's head. On the phone, she was pretty whiney but I think was fairly mellow the rest of the week, but I'm not sure. I took her to an appt at our clinic for some immunizations and we went to a movie after on Friday. My 16 year old niece came with as she stayed with us over MEA (which was really fun!). She was in a good mood and was fun to be with.

This morning, we were picking her up at 10:15 to go to church and lunch. She called when I was in the shower and it was another "urgent matter", and "emergency" according to her. She had Imani bring the phone into the bathroom. Michael ended up talking to her, and I did once I got out of the shower. The "emergency", was that the staff took her Halloween candy away from her. Alert the media!!!

Yesterday, the staff brought her to Como Zoo to a Halloween event and she got a bag of candy- this is what they took away from her. She was on fire about this!!!! Went on and on about how wrong it was that they did this, and I could not distract her. I told her it was good they took it from her, and tried to support the staff, but I always wonder what they think I am telling her as they sit there and listen to her trash on them.

I eventually had to hang up on her as she would not stop yelling, name calling, and just plain being angry. The phone rang right after I hung up and I thought about not answering it, but I did. She often calls right back. It was actually the staff person explaining why she took the candy away. I told her I supported her and was glad she took it.

When we went to pick up Akila, I could see her yelling and being rude to the staff. She was yelling at them to unlock the door. I heard the staff tell her they would not open the door until she stopped yelling. It took several minutes. I mean several. As I stood there waiting, I have to admit I was quite nervous about how church was going to go. Michael and I had said that before we left home even after we had been on the phone with her.

Amazingly, when she got in the van, she was transformed into a happy child. She completely forgot about the fact that they had taken her candy. Know why? Because they sent the candy with me. I gave it to her, and she then shared it with all the kids. If they had not sent the candy, she would have been on fire the entire time. Thankfully, when we dropped her off, she told me to keep the candy at home for her.

She was very well behaved the entire time with us, which was wonderful. She did call tonight, and was mumbling on the phone about her morning. She was telling me that the staff were writing things down about her when she was mad. She then actually got the notes and read them to me. I could not understand everything she said, but I did hear "kicking and biting".

She was very upset that they had taken notes as she knows that these kind of behaviors are part of the reason why she is still there. She told me that she is trying hard to make better decisions, but it is hard when people take her stuff. I told her that I would have taken the candy also and that she would have then kicked and bitten me, which is why we need a break from her. The hard thing about this, is that I can seriously handle it if it happens maybe once a day, or every couple of days. But it was happening at least 3 times a day and it had gotten very intense.

I did a training for Children's Home Society staff last week on FASD. The staff worked mainly in mental health with kids ages 3-18, school based and in day treatment. It went well, had lots of good questions. My old lady moment was when I recognized one of the staff people and thought that she was a daughter of one of my former colleagues. But no, she was one of my former students. Getting old.

I am also putting together a training in the next week on the impact that FASD has on a family and will be presenting it to some counselors who work a lot with the adult population, especially with adult offenders. If anybody has some thoughts or quotes they want to send me, feel free!!

One last thought, I will write on later this week hopefully. We got an OT evaluation done on Akila at the crisis home, and it has me kind of annoyed. It has several of those subtle parent blaming sentences strewn throughout the entire report. I feel a blog post brewing, but am too swamped with other work right now.

Restraint

I just got a call that Akila was restrained last night after I left her, this is her first restraint. She has also been up since 3:30 am and hit a staff with a cup this morning and left a gash on their head. I am so grateful that we have professionals helping us right now, but have to say that inside I am so nervous for her return to our home in a few weeks.

It also feels very weird to know that my child is hurting others, leaving gashes and all. Please pray for her to calm down...

DD waiver info

I am going to attend a community info meeting for Hennepin County tomorrow so I can better understand waivers, which is something we are trying to get Akila on. Here is the info in case anyone else needs to learn more:

Developmental Disabilities Waiver Overview

Developmental Disabilities (DD) Waiver services provide funds to teach life skills in the home and community. This training reviews the menu of services provided by a licensed or traditional service provider and outlines the similarities and differences. This session will also provide an overview of Consumer Directed Community Support (CDCS). We will also be discussing changes in non-licensed personal support services. Attendance is highly recommended if you are currently receiving DD Waiver services. If you are interested in more information on CDCS please call our coverage line at 612-596-6630.

Who Should Attend?
Parents, providers, legal representatives and persons with disabilities

Wednesday, October 19, 2011
3:00 PM to 5:00 PM


Champlin Library -
Meeting Room
12154 Ensign Avenue N
Champlin, MN 55316
612-543-6250 for directions

Register by calling 612-596-6631

"Urgent matter"

On Sunday when we brought Akila to church, she had me feel her arm/elbow area and the dry skin that she has. She has always struggled with dry skin, and has always been horrible at putting on lotion, or letting me put lotion on. I told her that it was Eczema, which is really dry skin. I goofed, she is now obsessed with this. I have told her this many times in the past, but now she is obsessed.

After church and lunch, we stopped at Target to get her some hair grease and a few things she needed. We also bought some hydrocortizone for her dry skin. She called me Sunday evening and was furious because the staff had taken the hydrocortizone away. I forgot that they need a Dr. order for any OTC type of thing. I told her that I would email Dr. Mackey and have her send an order on Monday.

I picked her up from school yesterday to bring her to dance. She was obsessing on the fact that the staff took the cream away. I explained why, but she didn't care. She was mad. We got to dance early and I don't have a key to the new studio yet, so we ran over to Walgreens and bought some more hydrocotizone cream. She applied it as we drove to dance. I thought the issue was resolved, until we get the order from the dr. I was wrong.

On the way home from dance, she started to perseverate on the issue. She wanted me to go into the crisis home and talk to the staff. I told her that it didn't matter what I said until we have a dr. order, and that Dr. Mackey must have been out today. None of this mattered, because it is urgent. She was sobbing, and must have said this was a serious and urgent matter at least 30 times, I kid you not. And I don't care obviously because this is a very serious issue and I don't seem to understand it.

I kept my tongue in line, and did not point out that she has had this Eczema for YEARS and it has never been a serious issue to her. I also told her that she had already put the cream on, and that we could put a 2nd application on before we got back to the home. Then today, I would call the clinic and make sure we get the order. She wasn't listening, she was just stuck in being mad and none of my solutions mattered, I offered several others.

Before you knew it, she was saying, "You people are all retarded. No offense mom, but white people are all retarded. I don't mean to offend you, but you guys are all retarded." By this point, I had decided to not respond at all, and was driving in silence, which makes her go on and on even more- she hates the silent treatment. I will tell her that when she is ready to listen, I will talk, but there is no reason for me to engage and go back and forth with her when she is clearly unreasonable. I just sat there listening to the message of "urgency" and the name calling and was trying really hard not to laugh, but I did drive with a smile. Some of the things she says when she gets babbling, are pretty funny.

When we arrived at the home, she then started to obsess about wanting to take the box of crackers into the house. They don't want the kids to bring in outside food as it causes issues with the other consumers. She was mad about this now. I brought her into the house, confirmed with the staff that she could not use the cream until we had a dr. order, which I did only for her benefit. She was mad, and going off. Holding onto my arm and yelling crazy. She was standing in front of the door so I just told the staff to unlock it so I could go. She got really mad as I walked away from her tirade, and was starting to call me a mother effer as I walked out the door. It was so nice to be able to leave and walk away. As I backed out of the driveway, I could see her in the living room giving the two staff members a mouth full.

It was very sad, but also so nice to be able to drive away. Only a few more weeks left of this respite, I need to finish getting a few things done around the house, but more importantly, I need to make sure I am refreshed and ready to handle these kind of "urgent matters".

Professionals

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.

Meds and extension

We did some med changes with Akila this week, and it did not go well. She has been off of Risperidone all week and she has been bouncing off the walls. We had to taper her off the med so we can try a different one, and it has been helpful to me to see that the meds do make a difference. By the end of the summer with the horrible behavior we were having, I was wondering if the meds were even phasing her. I know now that they have been.

The crisis home has noticed a big difference in her behaviors. They chart behaviors, and she has basically doubled in physical and verbal aggression in the last week compared to the previous week. And school, that has been really hard. Her aide has been communicating with me daily saying she is on fire, and just being awful. She is starting the new med tomorrow, and it isn't soon enough!

I did have her on Monday and Tuesday evening, when I brought her to dance class. I work at the studio, and we started later this year as we moved to a new location and have been in the midst of construction. Partly why I have been absent from blogging this week (and I was out of town last weekend). I noticed a huge difference in her behavior on those two evenings also.

Her stay at the crisis home has been extended, which I am really relieved about. Having her at the crisis home, feels crappy, yet the idea of her coming home doesn't feel right either. She will be coming home, but we need longer to work on the meds so I am so grateful that her stay has been extended. When I was talking to the crisis home manager yesterday, and reporting what the school has been dealing with, she told me about how horrible Akila has also been a the home. I told her that this made me very nervous with the possibility of Akila coming home this Saturday when she is extremely dysregulated. She then called one of the people working on that decision and then called back saying we had the extension. Phewwww.

Another thing that I have noticed while her meds have been different this week, is she has even less filters than normal. At the dance studio, I was sitting next to her. She pointed to a scar that is on my hand from a deep scratch she gave me this summer. She said, with kind of an evil smile, I feel really bad about that. It was creepy. She was smiling while she said it. Then she was telling a dance mom that I was talking to that her blonde hair is really dark, darker than mine. Then she started telling her just her roots were dark. Embarrassing! Another dance mom was asking her how school was going, she said "good, but I have had a huge attitude with my para". A month ago, she would have just said good. Not that she has good filters when on meds, but they are better than they are now.

Obviously, the filter issue isn't the reason we do medications. The fact that she had 6 episodes of physical aggression last week, and 27 this week, is why we do. She had 15 episodes of verbal aggression last week, and 27 this week. And this is a lot less than at home, due to the comfort level of Akila, and the less structured environment. This is part of the reason why we medicate, and it isn't even including all of the benefits to how much better she learns when properly medicated.