Saturday, December 18, 2010

Third family

Sometimes, it feels like FASD is everywhere. Probably, because it is.

I just got a call from a man who lives a block away. He and his wife and 3 kids, have been letting a young man stay at their house who has FASD. They have only realized in the last month or so that he has FASD. I know this young man, and I dearly love him. He has ARND, and is very mildly effected, however, we all know, there is really no mild when it comes to FASD (and it is all perspective anyway. I probably see him as mild as he is not a rager, which is what seems to put Akila in the extreme category).

This summer, I tried to bring up the young man's diagnosis to the man at a neighborhood party. I think the young man had only been staying there a few months and they were in a honeymoon phase. I got a call about a month ago from this father, and he was really frustrated. The young man had been stealing from their entire family and selling stuff to a pawn shop.

I talked to the father about the way that alcohol damages the brain. And the fact that these things would not stop happening. To his credit, he wants to support this young man. He wants to work with him, and not kick him out, as many families would do. He is committed to him. I told him about the Damaged Angels book that I think is so helpful for people to read when first learning about FASD. He stopped over within an hour and picked up one of my many copies. He asked if I would come and talk to his entire family (they are all teenagers or young adults) about FASD. I said sure. We have not yet set up a time.

Today, I received another call. Both the dad and the young man were on the phone. There was some major lying that had occurred, and they were both upset. I helped them talk it through a little bit. I am going over next week to talk about FASD some more and some ways of dealing with the behaviors.

I know how hard it is to deal with these behaviors as a parent. It would be really hard to deal with them as just a neighbor who is letting someone stay with them. I am so thankful that this young man has a second family who is willing to support him. I hope that if we need a second family for Akila someday, that one will be there. His first family is burnt out and dealing with a whole host of other issues right now. They still love him, but are not in a position to deal with him full time right now.

I wonder if I should be saying third family? This is a young man, like my daughter, who was adopted. His mom was his second family. This family is his third family. It does take a village. But it takes an incredibly patient village.

Wednesday, December 15, 2010

So much to say

We had a blizzard this past weekend, as most of you experienced also. It was crazy. It was a long weekend. On Monday, school in Minneapolis, where we live, was canceled. My kids go to a weird school district called West Metro Education Partnership (WMEP). It is 50% Minneapolis kids, and the rest are kids from 10 west metro school districts.

So, our school was not canceled, thankfully. But our kids are all bused by the districts that we lived in. That means we had no buses running. I was kind of thinking this would be the case, and was planning on Monday morning to drive the kids to school. About 1/2 hour before the bus normally comes, the school posted that they were open on Facebook, but there would be no buses if you lived in a district that was closed. This is pretty much the first time this has happened.

Well, there were not many kids at school. One of my kids had 5 kids in class. When I dropped them off in the alley at school (they go to school in downtown Minneapolis), before i had even pulled out of the alley, a teacher called my cell phone to laugh hysterically at me. Here is what she said, pretty much: "Only YOU would get your kids to school when there are no buses. Only YOU!!! I suppose you were ready for a break from Akila?" I laughed hysterically (this teacher and I have a really good relationship, and we tell it like it is). I said that I was actually sick of all 4 of them, after being cooped up in the house since school on Friday. That made me laugh. My kids were 4 of very few kids from Mpls that made it to school that day. I am so proud.

On the way to school, Imani randomly was asking why they don't put all the bad kids in one class and all the good kids in one class. A good question. I was explaining the many reasons why they that wouldn't be a good idea. She said she would like that for just one day to see what it would be like. During the day, I was thinking that it might kind of seem like that, since it so happens that some of the kids from the city happen to be the ones with more challenging behavior. I don't know how to say this without sounding prejudice. It is not completely this way, of course there are easy and not so easy kids in the burbs and the city. But I wondered if it would feel like she was getting her wish.

When I picked them up from school, the first thing Hezekiah said to me was that Imani got her wish, and it was mostly good kids today. Very interesting. Tuesday, there were no buses, but a few more kids made it to school as they knew there were no buses. Today, the buses were running. And ours got stuck. They had to send another bus for the kids to board. What an adventure.

Last February, I wrote about a young woman who had lived behind us in the alley years ago. I had run into her at CVS and talked to hear about not having kids and being on birth control, among other things. She called me tonight. And yes, you guessed it. She is pregnant. Not married. 20 years old. No job. Not in school. Living on welfare and SSI. Keeping the baby. Not drinking (praying she is telling the truth). Starting school in January (she has told me this the last two times I have seen her- which have been at 6-9 month intervals).

My heart is sad tonight. I know this young woman enough, to know that parenting is going to be a challenge for her. She is going to stop by next week and I will be praying for wisdom and the words that are right. I have been really struggling lately with the abuse and co-dependence that I have been witnessing of the welfare system, and the unemployment system. I know that there are people out there that are or have used both systems properly, but I can honestly say, that I rarely see those situations. I know I am sounding cynical, but it is hard to live in North Minneapolis, and see amount of abuse.

I know I am going to stir up some heated comments here, but I guess that is OK once in awhile. Remember, I acknowledge that the system sometimes works. But I am convinced that it does not the majority of the time.

Thursday, December 9, 2010


Akila had a Dr. appt today with the Psychiatrist. I had just told her I would pick her up early from school for a Dr. appt, she did not ask which Dr. She has been there twice only, in July and September.

As we were driving, she asked which Dr. we were going to. I told her, and she got really mad. I asked why. She said because I always tell her all the bad stuff Akila has been doing. I said, that I had mostly good things to report and we were mainly going because of her sleep disturbances (she has been waking up in the middle of the night 3-4 times a week again).

She was so happy. She made sure that I told the Dr. that she had been good.

On another note, I was very brilliant to make a Dr. appt for her today at the end of the school day, even if it was not intentional. Our school has an event tonight around the Hollidazzle parade. We can go to the school, eat dinner, and then we all walk the two blocks to Nicollet Mall and watch the parade. We have done it most years. I am not feeling it this year.

I prepped the other 3 kids, saying I wasn't sure if we would go, and make sure that none of you bring it up in front of Akila. Well, they always tease the kids with it on the afternoon announcements. Whenever there is an event like this, Akila comes home insisting we go. She doesn't even seem to know it is tonight. Good thing, as I have a headache.

Wednesday, December 8, 2010

I hate spirit week

This week is spirit week. I hate spirit week. In theory, I like it. For neuro-typical kids, I mostly like it. For Akila, I hate it. It causes nothing but stress.

Here is the breakdown of the days:
  • Monday, Mismatch day
  • Tuesday, Twin day
  • Wednesday, 80's day
  • Thursday, Celebrity day
  • Friday, Grade color day
Sunday evening, Akila was convinced that she needed a Justin Bieber shirt for twin day. She and some girl (whom I had never heard of), were going to wear Justin shirts. We don't have a Justin shirt. We had several mini rages about this. It was not fun. I could hardly get her to bed. Told her that I might check the thrift store on Monday for a Justin Bieber shirt, as she didn't need it until Tuesday (twin day).

We were able to get some mismatched outfits ready for all the kids, that was easy enough. I texted Raquel, Akila's aide, on Monday morning and asked if she could help Akila coordinate with someone to be twins, and that we were having issues. Last year, I remember being on the phone with Raquel the night before twin day trying to have the two of them dress as twins. It did not go well.

By the end of Monday, Raquel (who is totally awesome, I mean seriously awesome), texted me what Akila was to wear to match two other girls, as triplets. It was all stuff we had, which Raquel said she would make sure of.

Today is 80's day. Akila has leg warmers on, a bandanna around her neck with a knot tied in it, my Chuck Taylor high tops and some other stuff. It was fairly easy. All four of them looked fine. It is hard to do 80's day with African American hair, as you can't really tease and feather it. Akila has braids in, so we tried to put it in a side pony.

Tomorrow I dread. Celebrity day. Akila thinks this means to wear a shirt with a celebrity. Maybe it does. We don't have any. I will have to think about it, but it won't be fun. She usually does not like any of my ideas.

The only good thing about spirit week, is that I have not had to do laundry and keep up on uniform shirts.

Communication challenges

We constantly have communication challenges with Akila. Often, she will ask a question, and we will answer it. Sounds simple enough. But not when she doesn't like the answer. And I don't mean when we say no (although that is never received well). I mean when we don't understand the question so we give the wrong answer.

I will ask for clarification, trying to dig into the story to find out what she is actually asking, and this inflames her. She gets really mad. I stay calm, and keep explaining that I am not sure what she is asking. It does not go well. Probably about half of the time, after prodding, I can figure out what she is asking and give the correct answer. At this point, she is usually upset and I still need to calm her down. The other half of the time, I get called every name in the book and she gets quite upset.

I can't think of a good example, I need to start writing notes down when a situation happens. I do have a small example, not an extreme one.

On Monday, her PCA was sick, had some stomach issues with vomiting. Yesterday, Akila was asking me about this. Her question was, "How did Jen get sick?". I said, she was vomiting. She repeated her question agitated. I said that all I knew was she was vomiting, and maybe she had a headache and fever, but I didn't know. She repeated her question again. I finally realized she was asking me what caused Jen to be vomiting.

I said I did not know, that maybe she had a stomach virus. She then, with a really condescending voice, said, "Mom, only computers get viruses!". Duh. I laughed, and explained how humans had viruses before computers, and that the same name was given to computers when they were infected with something.

The literal mind of an FASD kid can be quite frustrating when trying to communicate. And once in awhile, thankfully, it can be cute. I like those moments and am thankful for them.

Thursday, December 2, 2010


We, or should I say, I, am already addicted to our great PCA's. The 5 day Thanksgiving break with no PCA's was torture. We were all losing our mind by Sunday. It was a rough day. Akila was very edgy and quick to anger, and so was I!

Things are back to normal this week, and I am glad. The bummer, is two more weeks and then the two week Christmas break. Gearing up for that right now.

Great news! We got an alarm system installed today. We received a Family Consumer Grant or something like that from Hennepin County to install it. We won't be doing the monthly monitoring contract thing or anything like that. But it makes all kind of noise when any of our exterior 3 doors are opened up when the alarm is set. It is a nice relief. I will update you guys in a few weeks, but if anyone is looking for an alarm system, these guys were great and it was the best price I could find. It is actually the son of Kathy, my next door neighbor/mom.

Last Tuesday, before Thanksgiving, Akila came home from school wanting to invite a friend for a sleepover. Once in awhile, she gets a bug up her you know what to have a sleepover. She really has no friends to do this with. Sometimes, we will have the two neighbor kids sleep over, but that is it. And this does not satisfy her need for a sleepover. She wants to call a girl who went to our school through 3rd grade, Akila is now in 6th grade. She wants me to call her and invite her over. Well, I'm pretty sure this girl would not be interested, from the last time she was over, it was kind of weird.

So Akila perseverated on a sleepover. Trying to think of people. Then she called up her full time para from the school day and invited her for a sleepover. Then she wanted to call the PCA's and invite them. It was not fun. And it made me very sad for her. She just does not understand why she doesn't have any close friends. And she also does not understand, that friends do not want to come over here, to watch her call me a jack a@# and tell me to f@$#! off. It is not enjoyable for other children to watch her hit and kick us, and act totally out of control. I have tried to explain this to her. That she really can't have friends over for a sleepover until she can control herself better. This goes over really well.

And back to the regression I have been feeling with her. I do feel bad for her. It must be so hard to live in her world. To go to school with 11 year olds, who are typical 11 year olds. Starting to get into boys. Listening to music. Having cell phones (still too young I think). She wants all this stuff. But she also wants a children's refrigerator, stove and kitchen set. Like we use to have when the kids were young and got rid of years ago. She wants that, a cell phone, some Barbies, an Ipod, a Baby Alive, some skinny jeans, a doll house. She is so conflicted. She wants to look typical, and do the cool things, and come home and play with barbie dolls.