Wednesday, March 30, 2011

Please don't slime me

Sometime it is just amazing how short term Akila's memory is for her to be able to control her behavior. Before school this morning, she was asking if she could be good for 4 weeks, if she could get a cell phone. I asked what she meant by being good. She said not swearing, hitting or kicking. I said you just kicked me 5 minutes ago when I asked where your medicine was.

I had her medicine sitting next to me at the dining room table and it had disappeared. I had asked her to get it for me and she had said she did not know where it was. She thought this was a fun game and she wanted me to play. I did not want to play. I remained calm, and did not engage, did not get mad, at all. We still had time. I waited a few minutes, and asked again. I was just going to wait a little longer, and get some different meds if she didn't get it.

Then came the cell phone conversation. For the zillionith time. She pointed out that she hasn't been swearing much lately. And she actually has been doing a pretty good of trying not to swear, and I complimented her on this. She has been using words like freakin instead and stuff like this. But when I brought up that she had just kicked me, she got mad, and angry, and pushed me, and said it was my fault, and called me a name, and got yucky.

This past weekend, she had an absolutely great day on Saturday. Her PCA was amazed at how well she was doing as she has been rough with this particular PCA for the last several months. Then, on a dime, she changed and was raging. I had to restrain her, which I haven't done in almost months. The PCA was kind of in shock, as I said, she turned in a dime. And during the restraint, the doorbell ringed. It rang a few times. At first, I was going to ignore the doorbell. Then, I decided to answer it, remembering that sometimes, a distraction like a person at the door is all it takes to snap her out of a really bad mood. And it worked. It was some neighborhood kids that we haven't seen since last fall. Bad mood and rage over. Thank goodness.

We leave for California tomorrow. Tune in to Nickelodeon on Saturday night at 7:00 central time to see if we are in the crowd on the Nickelodeon Kids' Choice Awards. It is going to be the trip of a lifetime, they are treating us like real VIP's. We get to do lots of free things, and it should be lots of fun. I am just hoping that they don't slime the audience this year. This is the awards show where they slime a bunch of celebrities each year. One year, the slimed the entire audience. I'm hoping they don't do that this year.

Wednesday, March 23, 2011

Small whine session

Had a bad headache yesterday while I watched my little 15 month old guy all day. Tried to go to bed early. Slept poorly. Had my follow up neurology appt today with the headache specialist. Good timing. Or so I thought, before the snow hit.

Got up early, which the headache made easy since I did not sleep. Showered, got the kids off. Also had an appt to bring the van in for some issues it is having. We all seem to be having issues, the kids, myself and the stupid van. Had it set up to rent a van from the Honda dealership. Left the house at 8 for a 9:30 dr appt. Had to crack the snow off the van forever before I could leave, frozen on with ice and snow. Fun project with a pounding headache.

Got to Honda. Had to crack the stupid snow off the rental van. Was not happy about this. Got into the van. It was 9:15. The dr. was just down the road. Was going to be on time. This is important to me. I am crazy anal about being on time. Even with four kids and all of our issues, I am uptight about being on time. Pulling out of the parking spot, the van was stuck. Slick parking lot. Couldn't get it to budge. Tried to get it to rock, reverse, forward, reverse, forward, etc. Couldn't get it to budge. Finally, had to go inside. Had three Honda men come outside, took them forever, to get it out.

Was 10 minutes late for Dr. appt. Ended up taking 3 hours for appt since I was late. Are you kidding me!!!!!!!!!!!!!!!!! 3 hours. I was 10 minutes late. But this guy is hard to get into. And he is good. And I was desperate. My headaches have been reduces by 1/2 in the last two months, but they are still here, as evidenced by the massive one I have today. I just gave myself two injections, one in each leg. They gave me longer needles. Scary needles. Ones I wasn't willing to deal with in January. Now I am. Hoping in an hour or two, it is gone or better. By the time the kids get home at least. They did also give me Zofran for the nausea that comes with a migraine and that has already helped. That is awesome.

Then Honda called and said $3,300. Whatever. Of course, they had quite a list of a bunch of other things we "need" to do. But it is going to be over $1,000. When isn't it? On a 1999 piece of junk with over 170,000 miles. Eight days til California. I'm ready.

Tuesday, March 22, 2011

Angry mode

Sometimes, it seems like Akila just needs to be mad. It is not even like she really is mad at any one thing. I can sit and be patient and calm, ask her what she needs, what it is that she is upset about, and she just stands there with a very angry look on her face. She cannot verbalize what she needs. She cannot tell me what she wants. If I walk away and tell her to let me know when she is ready to talk, she gets more angry. If I ask her if she would like me to stay with her, she gets more angry.

No matter what I do, she gets angry. If I give suggestions, or ask questions, she gets more angry. If I do nothing, she gets more angry. If I remain quiet, she gets angry. So we, stand, or sit, in a pool of anger. This happens at least once a day. It happens most often in the evening or after school. Sometimes in the morning. Almost always after she has asked for something that she cannot have, mainly to go to a store and buy something, which has been an obsession of hers for years. Materialism. She has been eaten up by the materialism monster.

She usually, tries to plant herself in the doorway of the kitchen, so that she is in the way of everyone when she is in the anger mode. This way she blocks traffic for the entire household and causes all kinds of problems. During nicer weather, the kids have even learned to go out the side door of the house to avoid her if they need to go upstairs. Not so easy in the winter. I have had to physically move her out of the way sometimes. I try to avoid this at all costs, as to touch her while she is in the angry mode is not a good idea.

I have learned that the best line of defense when she is like this, is to just stay in the same room, and continue on with some work I need to do. Empty the dishwasher or do something like that. All the while, she is more than likely standing behind me, probably cursing at me, spewing venom, etc. I have learned most of the time to just ignore this. Most of the time. She is looking for a reaction. She wants one. I try not to give her one. I try.

It just makes me so sad sometimes. It is almost like there is some kind of seizure or spasm going on inside of her brain that is just making her totally nuts. She is completely unreasonable. Making no sense. She has no idea what she wants. She cannot communicate her needs or wants. I just try to remind myself of this while she is in this mode and wait for Akila to return so we can get back to the evening and pray that it is not a long angry mode. Sometimes, they can last for close to an hour. That is when I have a hard time ignoring it.

Wednesday, March 16, 2011

Eating alone

On Monday, I was at our school helping with the book fair. When I was leaving, I was walking through the cafeteria and it was Akila's lunch time. She was sitting by herself eating lunch. This of course broke my heart. I know at the beginning of the year, she had been sitting at Imani's table with Imani's friends. I know that Imani's friends had gotten sick of this and Imani had struggled with this.

This is part of the reason why I was wanting Imani to be able to go to a different school next year. I love that she looks out for Akila, and is there for her. But I also don't want her to grow up always feeling the pressure to be looking out for Akila and putting her own needs aside. She is such a sweet girl, that I think she would too often neglect herself.

Anyway. I watched Akila for a little bit. Then I went and sat down with her. The odd thing, is that she doesn't even really seem to be bothered that she is sitting by herself. She seemed happy that I was there. Even as I am typing now, this is making me cry. I long for her to have friends. I long for her to have the social connections that I do know she wants, but doesn't understand how to build, or keep. The after school rages on Fridays that she has because she wants to call somebody for a sleepover. The after school rages she has because she wants to go to a different school where the kids are nicer.

She is not able to communicate that she wants someone to sit with her at lunch. Or that it makes her sad to sit alone. But she is able to say that she wants to go to a new school, and I think this is because of things like sitting alone at lunch. She isn't able to make the connection of course that she is sitting alone because she stole something from many of the kids, or called them names, or hit them, or was sitting at lunch and picking her skin and grossed them out, or other things like that.

I was bothered all night on Monday night by this. I was thinking about calling or emailing the social worker to see if she could do some friendship groups or something to try to build some relationships within the 6th grade girls or something. She is a new social worker to the building this year, and I have only met her once in September (she is very good and a very wise and experienced worker though). I was a the school again yesterday for the book fair, and I happened to run into her and she mentioned Akila and how her intern had been working weekly with Akila. Perfect opportunity for me. I mentioned the lunch thing and she said she would get on it. I am so thankful for a school who is always willing to support my child.

Saturday, March 12, 2011

Los Angeles

We have been given one of the most amazing gifts ever. We were given a free trip to Los Angeles to attend the Nickelodeon Kids' Choice Awards from March 31-April 3. The bummer, is it is for only 4 people, so we can't all go. Comcast is sponsoring this awesome package and it is being given through Children's Hospital. I'm taking Akila and Imani and my niece Natalie who is 16 is coming along to help me out.

We get to stay in a luxury hotel for 3 nights, go to Universal Studios, go to a kids Spa to get ready for the awards show, attend a pre-award show party thingie, and do several other things. We are soooooooo excited!!!!!

What a day

Thursday was a day I tell you.

On Wednesday night, around 9:30, I received a call from a new family that I now consider friends. I had never met them, yet I have been praying for them for a few weeks. They are the family I mentioned had one of their children taken away by child protection a little over a week ago. They had received a letter in the mail and were suppose to report to court in the morning with their three other children. Their lawyer had told them to be prepared that this could mean that the court might take the other 3 children. They were trying to rally their friends and family to attend court in their support. I said I would try to attend, although I was babysitting my 15 month old little buddy.

We were on the phone until well after 10 pm. The next morning, I was getting the kids ready for school, when Michael came inside to tell me that his car had a flat tire. He was working on changing it. It was fighting him. I went out to help him a few times, sometimes, tires really fight back. The other challenge, other than the fact that the stupid tire was not wanting to come off, was that this is the car that has been stolen twice. And the spare tire has been stolen also. And we have not replaced it as it is $400 to replace. We could have looked at salvage lots. But we have not.

We were going to take the tire back to our garage and try to fill it up with our air compressor and see if it would stay full enough to drive to a tire shop to get it fixed, or even replace it with the mini vans spare. We finally got the tire off. Got the kids off to school. My little buddy arrived. I called a friend to see if she could watch my little buddy while I went to court. Then Michael came in to tell me the tire was not holding air and the van spare tire would not fit the car. I felt deflated (pun intended). I guess I can't go to court. I really felt called to go. Take the van, I said reluctantly. He left. Then I ran out and yelled, wait, I'll drive you to work. Duh!!!

I quickly packed breakfast and lunch for my little buddy and off we went. It was 8:15. I had to drive Michael to work to Eagan, from North Mpls, then drive my little buddy to Hopkins, then drive to Shakopee. Before I left, I quickly printed Mapquest directions. After I left Hopkins, I was following the Mapquest directions, and shortly after I got past Eden Prairie, I realized that my directions were horrible. I was lost and had no idea where I was. I called Michael at work and got his voicemail. I had only 20 minutes. At this point, I had grease on my pant legs, sweat in my pits and was laughing hysterically when the check engine light came on in the mini van. I then called my bro-in law Dan who thankfully answered and stayed on the phone with me and directed me to the front steps of the court house. What a blessing.

I was able to meet my new friends. And the best news, was that the county had made a mistake, and they had not needed to bring their other 3 kids to court. One of their friends had brought them home. What a blessing. But what a huge mistake that had caused them about 16 hours of misery and terror.

Anyway, it is a sad situation. This family has adopted a sibling group of 3 children that are hard children. I am pretty sure they are all 3 FASD, and have several other issues on top of FASD. Their 7 year old daughter had a melt down at school a little over a week ago which resulted in child protection being called and her being pulled from the home. I believe it was unnecessary. A huge over reaction. Huge. This is a loving family. One that has been trying to get help for their children. One that has been trying many different techniques with their children. One that is struggling with their children. Like we all are.

Thankfully, the judge and even the county attorney, really seemed to get this. This seems rare these days. This is not to say that their daughter is returning home, which is what I think should happen right away. That would be the right thing to do. But they are on the right track, and I do think she will be home fairly soon, all things considered. I have heard of similar cases where the child or children are not home for many months if not years.

This situation has hit home with me. As it could easily be Michael and I. Easily. When Akila was out of control today, we both reminded ourselves of that a couple of times.

I felt fortunate to have met this family. I hope to get to know them better. I believe that God puts families like this in our lives at the right place and the right time for a reason. I need them, and they maybe need me a little. It even seemed like Satan was working to keep me from going to court that morning. It was a rough morning I tell you. And I wasn't even dealing with what they were going through. I just had a stupid flat tire. That is what Michael told me later that night he was telling himself when he was out there saying to himself when he was originally annoyed. "Here I am annoyed with a flat tire, and this family has their child taken away, and are facing the possibility of losing their other 3 children". It is humbling.

Lord, thank you for protecting these four children, their parents, and please re-unite them as soon as you see fit.

Sunday, March 6, 2011

The dark side

Akila was playing with a Nin.tendo DSI thingie last night. They have lots of cool things you can do in them to use your imagination. Like drawing scenes and making stories and books up.

She of course was making up a book where someone was killed. Let me point out that we do not watch violent shows. We do not even have cable TV and the kids only watch PBS. Each page was more graphic than the page before. Bullets were flying. A girl was laying on the floor dead. Blood. Gore. Then you can add voice commentary. She was saying things like "Bam bam you're dead" and other lovely while she laughed hysterically. I was in the room watching her. It was kind of eery. It was kind of creepy. It was very scary. Like our future.

Thursday, March 3, 2011

Astro my toosh

I was at an event last week. I met a nice couple. Briefly mentioned my daughter and her FASD. We were interrupted as a program began. At the end of the evening, the lady came up to me and handed me her card and told me that I should call her as maybe my daughter was caught in some kind of life transition and if I knew her birthdate, location of birth and some other details of her birth, she could help her with this "transition".

I said thank you and they left. Then I looked at her card. She is an Astro-Psychologist. Does Esoteric Healing and Transitions/Life Passages Counseling as well as Spiritual Direction and Astrological Services. Can't tell you how many times I have been given strange advise like this. People have a hard time understanding brain damage. It seems pretty straight forward to me. Her brain is damaged. It sucks. Yes, there are things we can do to help. Good nutrition. Medications. Prayer is most definitely a good thing and helpful. Praying to caste out the demons. Not so much. Helping her to "make a transition" and do some "astrological aligning" also isn't going to help. I know people mean well, and their heart is in the right place. But seriously. Seriously. I am biting my tongue. That is all I am going to say. I don't bite my tongue too often.

Wednesday, March 2, 2011

Please pray

Please join me in prayer for a new family I just got off the phone with. One of their children was taken from them today, and they have three children who have undiagnosed FASD (more than likely). My heart is breaking for this family. Child protection is involved and they are being very hostile towards this loving family. Lord, please watch over the children, bring clarity to the adults who have control and bring peace to the parents.

Update: I was wrong. Thankfully, only one of their children was taken. But in my book, one is too many. This is a loving family who is struggling with a challenging child and are not being given the support they need from the county or the medical community. I originally thought that 3 of the children had been taken away. I am glad it is one, but again, one is too many.