Quiet week

Akila has been at Bible Camp this week with our church. It was quite the journey to get her there, especially the last two weeks, but the Lord was good and it was His plan for her to attend. I'm not going to lie, it has been quiet and peaceful while she has been away. It was a much needed respite for the rest of us including the kids, a real blessing for the 5 of us.

But I am very excited for her to return tomorrow night to see how the week went. The camp staff were quite nervous about her attending, kind of the fear of the unknown. She had a 1:1 aide who is a young woman who attends our church who will be a senior in high school this year and we just met her the week before camp, but I loved her instantly. This is the first time they have had a 1:1 aide at the camp. Our church does this all the time for Sunday School, but not for this program. My gut thinks that Akila could have made it without an aide, but I could be wrong. I will get their opinion after they return.

I am just hopeful that there were not any major incidents, or even any real minor ones. But even more so, I am hopeful that Akila was drawn closer in her walk with Christ, and that somehow the week was able to have an impact on her heart. I am also praying that she made some friendships and that we will be able to continue some relationships after camp.

Bullet points

I have been horrible at blogging lately. Just been swamped and trying to catch up, so I am going to do some bullet points. The bottom line, is God has been faithful and good through lots of ups and downs.

• I can't remember if I have posted much on Zeke and all of the Dr. appt's he has had since March. Started off with a routine allergy/asthma appt in March in which they thought he had a sinus infection. Put him on some antibiotics and steroids for breathing and infection issues. Had us return in two weeks. Basically, have been returning every 2-4 weeks ever since as he has not been able to shake the infection. On top of the sinus infection symptoms, he has had leg cramps/aches, which initially, we weren't sure if they were charlie horses or what. Went into the pediatric clinic once just to check things out and all looked OK. On top of all of this, he has been getting hives and angieodema, which is a big time swollen lip. We thought these were both allergic reactions. Last week, the allergist did a more intensive blood draw and we got the results today that he is fighting some type of auto-immune disorder. We are being referred to a rheumatologist. Not fun, but good to be in a direction of figuring out why the poor guy isn't feeling well.
• Ms. Kathy, my next door mom and grandma to my kids, has had her double mastectomy and also had her ovaries removed about two months ago. They then found cancer in her fallopian tubes so she had to go in last week for a full hysterectomy and we are waiting for pathology to find out if there was more cancer floating around in there. She will have to start chemo in a few weeks. Please pray for strength for her as she is in quite the battle and is fighting it with the passion of a 25 year old! I'm very proud of her.
• We had the dance recitals a week and a half ago and I am still recovering from them. I am not good at logistics and details so my job at organizing the details and logistics is a goofy match. Trying to recover from weeks of prep and planning and trying to tie all the loose ends together as well as get the summer classes ready, is not my idea of fun.
• Summer vacation started officially on Friday and I spent the whole day at an all day meeting at Children's, and today running from two different Dr. appt's and a meeting at Children's, and processing the info I found out at Zeke's Dr. appt. My brain is fried.
• Akila is suppose to be going to Bible Camp on Sunday for a week, but there is a possibility she may not be able to go if we are not able to find an aide to go with her. Lord willing, she will be able to attend. It is looking like she may be able to go. I am very hopeful. She is very excited to go.
• Imani is going to a different Bible Camp the week after Akila returns. She is going with her cousin and is also very excited.
• We live in North Mpls, and feel very fortunate to be a mere 3 blocks from the devastation of the recent tornado's. I am thankful that the kids and I were at the health club swimming when they hit even so we missed all the drama. Well, not all of it. When, we returned home, Akila went nuts. All I could do was think of the families who lived inside of the "zone" that had special needs kids. I was imagining how Akila would have reacted if our house had been hit. She was bouncing off the walls and our house was not hit. I almost lost my mind. We had to take a walk to calm her down, so she could see it, and understand what had happened to our neighborhood. She was so deregulated, it was not even funny. She always gets like that, when the power goes out. She goes through the house a thousand times and turns every light switch on and off and every appliance on and off and just goes berzerk. Of course, on our walk, we were fortunate enough (NOT!) to witness some looting of a gas station, which really peaked her curiosity. It was quite ironic how she was going on about how dumb it is for people to steal, given her history with stealing. Driving around in our neighborhood is quite eye opening still. Where there were once grand old trees and lots of cover, it is now light and open and very strange looking. Feels like I'm in the burbs or something. Very sad, to see all the houses damaged, and in an area where so many people can barely afford the houses if they own them. Please keep north Mpls in your prayers.

I think that is all I can think of for now.

Preparing

Some people are preparing for summer right now. They are signing their kids up for summer baseball, summer camps, and other summer activities. They are planning summer vacations, summer family activities. But some of us are preparing a little differently.

My summer preparations include calling the social worker at the Children's Hospital Emergency Department to get her advise on how the mental health system works for children in emergency situations. Another mom somewhere is calling her local park and rec and inquiring about T-ball.

Another call I made was to a mental health agency about a free needs assessment for Akila to see if she might fit into an inpatient hospitalization, day treatment or outpatient program. Another mom somewhere is calling community education to inquire about a dance class.

I also emailed our church several times to make sure that the staff is completely aware of all of Akila's disabilities and challenges for the upcoming overnight bible camp in the end of June (I don't think they get it still). I would like to sit down and meet with the staff who will be working with Akila. Another mom just signed up her mom and didn't think twice about it.

I've been thinking about the beaches we will go swimming at, this is a favorite activity of my kids and my own personal favorite. This summer, more than ever, I am putting thought into which beach or beaches we will go to. I need to think about things like how crowded they are (how many people to witness meltdowns, or how many potential people for her to clash with, how close the car is to the beach (escape route when she is raging and we have to pack up quickly and leave), how close they are to our house (how long all of us will have to be in the car with her as she is raging). Another mom will just pick a beach she likes the most.

We have one small get away each summer over the 4th of July weekend when we go to Willmar to some of my family friends. Michael cannot get away that weekend ever due to work. I am already wondering how I will do it this year with without another adult. I am trying to figure out who I can talk into going with the kids and I. Another mom is just planning her little get away without another thought about who to bring with.

And the biggest preparation that I am thinking about. One that I need some of your help on. I am wondering if any of you out there have experience with walking around with a visible wound on your face from your child. I am trying to prepare for this as I feel that I am close to getting one. Anyone had a black eye or a bruise on your face from your child? What do you say if asked about it? Do you tell people it is from your child? Akila is very close to clocking me in the face. Very close. I am mentally trying to prepare myself for if this does happen.

Coming out of it

I don't know why, or how, but I am so grateful. We have seem to have come out of the three week funk that we were in. Since Friday evening, Akila has been on a great stretch. I don't know if it is weather related, or what.

She had three horrific weeks. And I mean horrific. She always has been a cyclical child. We go through waves and cycles of tough behavior. And we hit a doozy of a rough patch. The Lord knew we didn't have much left in us and He in his infinite wisdom gave us a breather. Thank you Father.

It was to the point where last Friday evening I scheduled one of our PCA's to take Akila which is not normal but we needed an extra break. A mom at the dance studio whom I know well had sent and email asking if she could help as she is a regular reader of my blog. She has now probably learned that I am one of the few people in the world that actually take people up on offers to help (so look out people!) and so she ended up taking Akila for several hours this Saturday afternoon.

Akila's Saturday was jam packed. Woke her up to go to a hair appt, went from that to a dentist appt, from that to the dance mom's house, cam home from her house to my nephew babysitting as Michael and I went to a wedding that evening. Akila was great for my nephew. Phew. Then Sunday came, and we had a few tiny bumps, but all in all, she was great. Wow, not at all like the three prior weekends.

She had a good day at school yesterday and the PCA from last night said she was totally different last night. She was horrible for her last Monday evening. I just gave her morning meds to her and she didn't put up a fight or anything. Strange!!

It is an interesting life. It is not like her behavior the past 3 or 4 days has been perfect or great. But it has been baseline for Akila. It would not pass for most families. It would not pass for my other three kids. It would horrify the majority of parents in our country. But it is her baseline. It is passable. Livable. The last three weeks, not so much. We could not have lived like that much longer. We were close to making phone calls that we were dreading. I had a horrible feeling in my stomach, in my gut. The other children were saying things that were troubling, heartbreaking.

I am just so thankful that she has came out of it. That we all have came out of it.

Wet socks

Yesterday Akila was suppose to be picked up after school by one of the PCA's but she forgot and came home on the bus. She walked in the door and at the same time her para called and realized she had rode the bus home. I asked her to go out to the parent pick up area and send the PCA home to pick up Akila. I was hoping this wouldn't be an issue as sometimes Akila has an issue leaving.

We have not had success with having the PCA's work with Akila in our home. All that Akila does is constantly fight with her siblings and me. And I mean constantly. It is almost worse than having a PCA. So for the most part, they take her into the community and do things with her. They pick her up on the two days that she has dance class and take her to dance class and help her to be appropriate during dance class. They take her to the park, to the library, bowling, etc. I was praying that she would cooperate.

Thankfully, she did. Especially, because the last two plus weeks have been our worst ever. We have been struggling with extremely violent and aggressive behavior. I was so thankful when she left without a fight. Then about 10 minutes later, she returned. She came in the house and asked for $5 to go to CVS. I said no. She has had several rages this week over wanting us to buy fake fingernails. If you have read this blog for very long, you will know this is not a new problem. You will also know that it is not about the fingernails.

We cannot buy her everything she wants. We would be broke. She constantly wants. She expects us to buy her 10 things a day. This is a part of her disability. She does not understand budgets. She does not understand what is fair to the other kids. She does not understand the difference between a want and a need. She literally thinks she needs fake fingernails. She has 8 million colors of fingernail polish. Please do not comment to me about doing her fingernails. It is not about this. Next week it will be about wanting a bikini. The next week it will be needing a tank top. The nest week it will be skinny jeans. Then back to fake fingernails. Always back to fake fingernails. I can suggest until I am blue in the face that she can earn money to buy her own. That does no good. She will rage.

Anyway, she came back, wanted money, I said no. The PCA came in the house, she thought they were stopping back to grab her teddy bear. She told Akila to grab her bear and some Barbie dolls that Akila had "duped" her into thinking they were stopping back for. Akila told her to shut up as she hit me and started to rage. She escalated. It got ugly. The PCA tried to help. It didn't work. She escalated some more. I went upstairs, gathered the teddy bear and barbie dolls, she hit, kicked me some more, raged some more, escalated some more. I came down, grabbed my phone, purse, went to the family room, told the kids to go out the side door and get in the van. Told the PCA we were leaving and that she would be fine once we were gone. She was looking kind of funny at me.

It was raining. I got outside. Hezekiah was standing there in his socks with no shoes. I said to get in the van. He was mad. I started laughing and we drove off. The boys were both kind of mad. I just couldn't stop laughing as they both had no shoes on and their socks were wet. I yell at them all the time to not go outside with just their socks on. They were annoyed with me for laughing and kept asking me why I was laughing because they didn't think the situation was funny. I said it kind of was. They didn't think it was at all. I said you either had to laugh or cry and I was choosing to laugh.

They wanted to know where we were going, I said I didn't know. We ended up at Dairy Queen and they all got a treat, so not a bad deal. By the time I got back in the car, the PCA had texted me that the house was clear and said she was sorry. I texted back that we live and learn. I was glad to get back as the oven was preheating for some lasagna that was all ready. Would have been heading over to my friend Betsy's if I hadn't gotten the all clear text.

I got a call from Akila's special ed teacher today. She was having a tough time in his classroom. She was yelling at him the whole time we were talking. She hung up the phone while we were talking. He called back. She is just losing it lately. Summer is going to be very difficult.

Mommy's meds

I have been volunteering at Children's Hospitals & Clinics for two years now and I love it. They have been so good to my kids and my entire family, I have great respect for the staff there and just love them all. I serve on a few committees and also speak on different panels. In my career in education and as a youth worker, I have spoken in public and at conferences a million times in front of small groups and large groups. I have presented to school boards where my job is on the line, on budget issues, on very edgy diversity issues, presented to several thousand at national conferences, presented at conferences- what I'm saying, is that I am fairly comfortable speaking in front of groups.

So about a week ago, I had the opportunity to present with about 5 or 6 other moms to the Board of Directors at Children's on the Family as Partners program at Children's, along with the Coordinator of the program. We met twice to prepare for this presentation. Each of us were speaking for 2-3 minutes, and we were just sharing about the projects that we are involved with at Children's. Easy as pie. I could talk about this in my sleep, right? You would think.

We had a nice Powerpoint that had been put together. When it was my turn, I got up there, and started babbling like a total drunk fool. I sounded incoherent and was having a hard time finding words or making sense. A few of the Dr.'s who were there and a little bit familiar with me and what I was trying to say were trying to fill in the blanks for me. The Coordinator of the program finally told me to move on to the next bullet point. I finally had to excuse myself and just go sit down.

It was horrible. I have never ever had that happen. I sat down. The next parent got up and started her turn. I sat there and was wondering what just happened. I then got up and went out in the hall and went to the bathroom. I was feeling fine, I didn't feel emotional, or weird or anything. My brain felt clear for the most part, but I could not figure out why I completely lost all of my words and thoughts when I was in front of the podium. It was the most bizarre thing that has ever happened to me. I was totally embarrassed. I wanted to leave, but I didn't want to freak out the ladies, so I grabbed a drink from the coffee shop and waited. They all came out, thinking I would be a basket case, and I wasn't. I should have been. Again, I was completely embarrassed. But I wasn't feeling like a wreck.

Eventually I went home. I got home, processed the event, felt even more embarrassed. I had been to an emotional Dr. appt before the speaking event, but that wasn't what was getting to me. It was all too weird. Then, the phone rings, and it was the very kind Dr. who is in charge of Children's calling to see if I was OK. That is how stupid I looked. Even more embarrassing!!!! Ha. How nice is that. Yes, I told him I was fine. Thanks for calling and making me feel even more dumb. :) Gee whiz.

Then I emailed the three Dr.'s that I work really closely with on a committee to tell them that I blew the report as they knew I was going to be talking about our committee. We have a lot of fun smarting off and I knew they would get a kick out of my goof up. They all responded with love of course. After that, I needed to send an email to the Dr. who is in charge of the ER for Children's to ask him to write an article for our newsletter and it needed to sound professional, so I needed to put some thought into it. This email took me forever to write. You would have thought I was drunk as I was typing this email. I kept having to delete and rewrite this email. It honestly took me over an hour to write. I finally realized that something was wrong with me.

I was having cognitive issues. And then it hit me. I am on a med called Topamax for migraines. I started it in January, but my neurologist and I have been increasing the dosage every two weeks as I have had no symptoms, and we have been going to a pretty high dosage. Well, it has obviously hit me. I was functioning normally for the most part, but with the "higher level" functioning skills, I was struggling. I emailed one of the docs to see what she thought, Akila's pediatrician, and she emailed me back and said I was probably right as this med's nick name is "Dopamax" which I remember reading when I first was going on it.

Anyway, I was relieved to figure out what has happened to me. It really was very out of character for me. A three minute presentation on sharing what I have been doing for the past year, a no brainer. Not even something I need to prepare for or memorize if you know what I mean. Everybody kept saying to me that this was an intimidating group. I really didn't feel intimidated. I was way more intimidated when I was presenting to the school board that I worked for and my job was on the line and I was on live community TV and there were was a cross dressing community member in the audience who didn't like my diversity group and wanted our diversity day cancelled and was shouting obscenities at my students and I felt like a mama bear protecting her cubs and I was all of 23. Or when presenting to the school board on my youth center budget and having a hostile board member tearing my budget apart and asking me questions that I had to try to figure out on the spot and sound knowledgeable about.

Needless to say, I backed down on my dosage and came out of the fog. As I sat there that night, I did realize that I was feeling a little foggy. I thought I was just a little tired like us parents just get sometimes. But it was a medication fog. This experience has been a really good empathy lesson for me. One person asked me if it makes me want to take Akila off the meds. Just the opposite. It makes me want to work hard to find the right balance. Topamax really has helped to reduce my migraines. I have not had a vomiting migraine since February and have not had a bad headache since March. That is truly amazing considering that in March, I had a headache over 50% of the days.

The key, is to find the right balance in the meds, and that is what I have done with my topamax, and that is what I need to do with Akila. Meanwhile, I am calling myself the village idiot of Children's! I am co-presenting a training on FASD with a Dr. in June for all of the pediatricians at the general peds clinic and I met with the Dr. last Friday to plan the training. I had to share my speaking flubber with him in case he has heard about so he is not nervous about presenting with me (rightfully so), so I could reassure him that I would have my meds adjusted. He got a kick out of the story and was of course understanding.

Dou*he bag

We are in a really bad place right now. Akila's behavior has been at a new level of yuck. Extremely volatile and explosive. She has been calling us dou*he bags and ba*terds a million times a day. A million times a day. It really wears on you. To respond to the name calling, is futile. To punish, is futile. She started on a new med last week, Tenex, and I'm not sure yet if it is making her more nutty or helping. I have to give it several more days before we can decide as it takes at least a week before you can tell they say.

One evening last week, it was discovered that Akila had taken all of Imani's Easter candy. Akila fessed up and apologized. That evening, I let Imani finish off the bag of jelly beans that I had left. the next morning before school, I was getting ready to give Akila her meds. She was in a really good mood, Michael had just been complimenting her on how well she was doing. Then she somehow asked about the bag of jelly beans that she knew I had left over. I said they were gone and Imani said she ate them all. Akila went ballistic. Totally ballistic. Through the roof ballistic. Foaming at the mouth ballistic. Bouncing back and forth between Michael and I like we were boxing pads ballistic, punching the two of us in the gut ballistic. She totally lost it.

She refused to take her meds until she got the jelly beans. She could not see the logic in that the jelly beans were gone. She saw the empty jelly bean bag. She understood that she had eaten all of Imani's candy, but she still did not think it was fair that Imani should get to eat the 1/10th of a bag of jelly beans, because she wanted them, and, after all, it is all about her (FASD talking). We stopped trying to reason with her since there is really no sense in trying to reason with a FASD kiddo when they are in a rage. Even though they are trying to engage you in a reasoning discussion, it goes nowhere, and just frustrates all parties.

Needless to say, it was not a pretty morning. Somehow, we got her settled down. Well, settled down is not the right word. But that is just one example of a situation that has reoccurred over and over in the past week or two. It is tiring. The other 3 kids are worn out also. It is making us all nervous for summer. 26 days of school left. My annual countdown has begun. Am I nervous? You betcha. More than ever. I don't think we are going to make it through this summer without a mental health hospitalization. I really don't.

Playing catch up

California was great. Akila did really well. While I was there, my best girl friend Juli, who is also my boss at the dance studio, had a baby. Baby is healthy, Juli ended up in the ICU with blood pressure complications, for 3 days. Kind of freaky. I was in town for 3 days before Michael and I took a trip to New York City that I kind of surprised him with.

During these 3 days, was when Juli was in the ICU- which meant work was crazy, and I was stressed, doing work, and preparing to travel, as I was winding down from traveling. Too much to write about , not enough time. Juli is fine now, and her baby girl, Hadley, is beautiful. What a blessing.

New York City was awesome, and just the break from reality that we both needed. We saw Jersey Boys on Broadway. Walked Central Park, went to Ellis Island, went to the 9/11 museum, ate a lot, and had a really nice time. It was a great time. Three nights, Thurs-Sun. Michael's Brother Dan, and wife Tara, watched the kids, mainly Tara as Dan was out of town most of the time. God bless Tara, what a blessing they are to our family! We really needed a break.

Imani is having surgery next Tuesday. She has always had nose bleeds, and they have been coming more frequently and she has become more annoyed with them lately. She has really large blood vessels in her nose so they said that a nasal cautery is basically the only thing that would stop them as their nuisance nose bleeds. So she chose to take care of it. It is a short procedure, but for kids, it is so painful, that they put them under. This is so weird, as Imani is my only kid who is always healthy, never has had an issue, never has had to go to the Dr., so it is kind of weird. The insurance company doesn't even know she exists other than for her physicals. Zeke basically has the same problem, so we may have the same thing done for him some day as well. I am sick of washing blood out of sheets 3 times a week at least and out of their clothes constantly. Not to mention getting calls from the school nurse all the time.

So that is a little update, more later.

California

I am tired!!! It is 10:00 pm here in California, midnight in Minnesota, Friday night. They are keeping us busy!!!!! The plane ride went really well. I am so bad at taking pictures, I have to get some pics off of my niece Natalie's camera, she has taken more than I have. Akila and I were together, and Imani and Natalie were in front of us on the plane. It was a bummer that we were not together. Akila was like a tiny child, full of wonder. People were watching her and smiling she was so cute as she was in such awe at the experience. And she behaved beautifully. I was so relieved. We got to the hotel, and went swimming in the pool right away. It was gorgeous. We then had some time still and went down to the ocean and the girls braved the cold ocean water and swam in the ocean a little. They couldn't really get their hair wet as I hadn't brought Akila's swim cap with (she was not happy with me), but they had fun. We ate at a cafe on the ocean and had to be back at the hotel by 5:00 to catch a bus to the Nickelodeon Animation Studios for a welcome party. Here are some pictures. One of Akila on the plane ride, a few of the walk to the ocean, and the ocean.

Today, we got up and swam at the pool, went to Universal Studios, came back, went to the Santa Monica Pier, rode a few rides on the Pier, the girls had seafood (I hate seafood), souvenir shopped a little bit, came home, swam some more, and are crashing. Tomorrow, the girls have spa appointments at 11:00 to get their hair spray painted, nails done and get tattoos. We leave on a bus at 3:00 for the Nickelodeon Kids' Choice Awards which are at 5:00 California time, 7:00 Central time. Watch it live, see if you catch us in the crowd. Should be interesting, that is for sure. Akila has been pretty good. She has had her moments, no doubt. Hitting me at the seafood place was a highlight. Natlie thinks we should have a reality show on our family. I always tell her that she would have to be a part of it and her teenage issues would be highlighted as well. That the show would hear her mom and I on the phone all the time and me saying "Natlie did what??!!!!" :) She has been helpful, and that is a blessing. We are all wiped out. It was very hot today, and that definitely wears you out. I am not complaining, not at all. I like it hot. Especially after this winter. They won't let us bring cameras tomorrow. Natalie wants to smuggle a camera so she can video the Black Eyed Peas. I told her to jus have her friends tape it, they will get a better shot. Better deal than getting her camera confiscated and losing it. Or getting kicked out! I'm such a goodie two shoes. Ha. OK. Gotta get to bed, I'm wiped. Will try to post tomorrow night after the slime fest.

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.