Saturday, August 28, 2010

Tightly wound

Akila raged on Thursday night for nearly two hours, from 8-10 pm, just as we were getting ready for bed. And she raged big time. It was not fun. There must have been a rage that I once distracted her from by saying I would do her hair. Every time she is raging, she offers to stop if I will do her hair, a 2-4 hour process. Great.

Then this morning, she woke up still tightly wound. She was in a horrific mood and being very mean and nasty. I knew I had to get her out of the house. We went to the beach all day, and I am so glad we did. Some friends met us at the beach, and Akila played with their daughter the whole day.

Then I pushed the envelope even further and we went to their house for dinner. Left at 7:30, and she didn't even put up a fight. I thought today was going to be very tough, but it went great. And we needed a great day. Thank you Lord!

Thursday, August 26, 2010

TEFRA, some day

I sent in the application for MA through TEFRA on February 17th. I am impressed with myself as I copied the application and wrote the date it was mailed on top of it - are you impressed?

Anyway, we are still waiting. The phone system says it takes up to 30 days to determine eligibility. We are going on over 6 months. First, we had to schedule a physical as you have to have one done within 3 months of application, for the SMRT (State Medical Review Team) to determine if the child is "disabled". It took awhile to get the appt, and then a little while for the clinic to get the notes dictated and faxed in.

Then I received a letter that they wanted a neuro-psych evaluation. She had one done which I had already sent in. I resent it, and called. They said that was good. In the mean time, I had scheduled an appt for a neuro-psych evaluation as I did not trust them. Then over a month later I received another letter requesting a neuro-psych eval. I called, they said it probably meant they wanted a more recent neuro-psych eval (old one was 2 1/2 years old). We saw the Neuro-Psych Dr in the end of May. I harassed her for over a month to complete the report ASAP.

She got it sent in in mid June. Three weeks ago, on August 4th, I received the good news from the SMRT that they determined that Akila is "disabled". The SMRT sends the same letter to Hennepin County so I have been waiting to hear from them. I have called their automated phone system a few times and they don't show that they have received the letter. I was told that when they receive something in the mail or by fax, it can take up to 7-10 days before the social workers see it as the front desk staff have to scan everything. Brilliant.

I called yesterday. They have not received the SMRT letter (yeah, right). I faxed it last night. I received an email from the Family Coordinator at Children's Hospital and Clinics last week asking families about legislative things we were concerned about. I brought up the TEFRA process and how wasteful of state and family money, as well as state and family time it is. Do they think that the FASD went away, is that why they need a current neuro-psych eval? Is that why they want a physical dated within 3 months? Some families had one 4 months ago, and had to schedule a new one. We were due thankfully. I can understand it if the disability were something that is curable, or something a child could outgrow. But FASD and Turner Syndrome are permanent. What a huge waste of tax dollars, and time!!!!!

People, all I want is a PCA. Please. Twice a week even would bring great relief to our family, and to me personally.

Tuesday, August 24, 2010

cell phones

As many of you know, Akila is obsessed with cell phones. She has stolen many of them, including our school superintendent's. They have been the cause of many rages as Akila is convinced that she needs one. Just for emergency purposes.

Some of you may think that would be a good idea. You might tell me how we can choose a limited amount of numbers she can call or receive calls from. But let me remind you of the time she called 911 when I would not drop everything and go to the store to buy her Cheetos. Her idea of an emergency is not mine.

She received a cheap MP3 player for Christmas two years ago. It has been for close to a year. She received a Nintendo DS game for Christmas, it has been missing since April. I try to explain this to her when she thinks she could be responsible with a phone. It doesn't click with her.

The out I try to use most often when she gets stuck on the wanting a cell phone idea, which is about every 2-3 days (for real), is that when she can go for two weeks without swearing, name calling, hitting or kicking, I will get her a cell phone. I know, that may sound cruel. But I honestly would get her a cell phone if she could do that. I might even bring her to Disney World.

Today, we went to school for a uniform swap event. On the way home, she was listing off what she wants for Christmas. She hadn't even mentioned a cell phone. I was surprised. Then, she asked if she could be good between now and Christmas, if I would get her a cell phone. I asked her to define good. She covered it pretty well. She said, no swearing, name calling, hitting, kicking, etc. I said yes, she could have a cell if she could be good until Christmas.

I also asked her how long it had been since she called me a name. She said she didn't know. I said about 10 minutes. She called me an a-hole as we were leaving school because they did not have any pants in her size. We then also went over other things she can do when she is getting mad. She knows what better options there are. She listed them all. Count to ten, take deep breaths, squeeze your teddy bear, etc.

I honestly don't think 11 year olds need cell phones. But I absolutely will buy her one if she is good until Christmas. And I truly hope she is. ;)

The Dells

Michael's brother and wife, Dan and Tara, were going to the Dells on Sunday night and invited us with. Michael could not get the day off due to some crazy stuff going on at work, so I decided I that with the help of Dan and Tara, and their kids, I could do this without Michael. And it worked.

The 3 1/2 hour drive there was great, not a single issue. That is crazy when a 15 minute drive to school is usually full of issues. Good start to the trip. We stayed at the Kalahari, it was lovely. Two days of perfect weather, nice. First day, the kids swam all day, and Akila fit right in and always had a swim buddy with her. We even splurged and rented a Bungalow at the outdoor park which had a TV, frig, comfie seating and shade. We ordered pizza and ate in the bungalow. We stayed until about 8:00 or so when we finally went and checked into the hotel room.

We had gotten a suite with two bedrooms, a living room with a pullout couch, and a kitchen/dining room. It was a really nice suite. When we got into the rooms, the excitement of the day, on top of a new setting, was too much for Akila. She started to lose it and went into frenzy mode. Trying to call her room, running around, being bossy, rude and annoying. I took her out to the van to help me carry more stuff in (with the incentive that she got to drive the luggage cart thingie). When we were in the parking lot, Dan came out. He was going to make a run to Walmart to get some milk and cereal.

He offered to take Akila with and I was so relieved!!! It was the perfect distraction to get her out of the funk and it worked. The rest of the night was pretty smooth sailing (just a few typical bossy/rude issues). Day 2, Akila was a bit more clingy to me but not bad at all. We left to drive home yesterday around 5:00 and the second half of the drive was a bit challenging, but nothing totally out of control.

It was a great two day mini-vacation and I am really thankful for family like Dan and Tara being willing to let us come along, and being willing to help out. They are truly a blessing.

Tuesday, August 17, 2010

Inside thunderstorms

Our next door neighbor girl was having a birthday party at a bowling alley today. The mom invited both Akila and Imani but wisely asked me to come along if Akila came and said I could bring my boys. This is the mom of a 16 year old with FAS who is currently in Residential Treatment. She knows FASD. And she knows Akila.

It was not fun, not fun at all. When Akila bowls, she holds and carries her ball with her everywhere, so nobody touches it. It is very funny looking. But the problems started due to seating. You know how when you bowl, you may be in one of the seats, then when it is your turn, you get up to bowl and someone else may end up in your seat. There were a lot of girls in the two lanes, and not enough seats. When Akila returned from bowling, and her seat was taken, she lost it. Started calling the girl names and being rude, but quietly.

When I realized what was going on, I pulled her aside quietly and tried to talk to her. She was rude to me and stomping on my feet. I should have just left at that point. Dumb mom. The first hour is bowling, and there were several little incidences like that one. Then we went into the party room and had pizza, cake and presents. She was kicking her brothers who were across the table from her. She chased Zeke across the room at one point and I had to take her out to take a break, during which she kicked me and bite me a few times. Why didn't we leave then? She still had on the bowling shoes, my purse and keys were in the party room on the far end. I stood there strategizing how I could get in there to get the stuff without having her sabotage the entire party. Couldn't figure out an exit strategy, so we tried it again.

Basically, it was no fun, the entire time. I received several bite marks on my arm and a few kicks to the shin. We got home, and thankfully Michael was home. She then spent the next two hours on and off crying. At one point, I grabbed our cheap camera and tried to tape a couple of minutes of the rage for people who wonder. The video is poor, and it is not really focused on her or anything, but you can HEAR it. You may need to turn your volume down. She is very loud. This is a calm rage, she is not being violent, but she is just in a toddler whale mode. She has been doing this a lot lately. It is really hard to take when I think of the fact that she is 11, but I just sit there and try to remind myself that she is more like a 4 or 5 year old. And I pray for patience. And for it to end.

video

This was going on all evening. At this moment, it was because she did not want to take her meds. A few minutes after the camera was turned off, she out of the blue told me she wanted to go to CVS to look at something. She didn't want to tell me what, but I gathered it was something to do with her hair. No answer was satisfying to her, the only one that would have been satisfying would have been yes. I tried everything. Offered to play Barbies, which I hate doing. I finally just shut up and waited it out. It was a long time. She carried on like you see in the above video for over 45 minutes. It then took her a long time to settle down for bed.

It was a long evening. I am glad it is over. Please God, no thunderstorms outside tonight. We had enough inside.

Going for the jugular

I was reading Kari's blog and it reminded me of something. She mentioned that when she had a hysterectomy a few years ago, she told her daughter to be careful with mommy's tummy and showed her the incision. Minutes later, her daughter punched her in the stomach. This rings true to me also.

As Akila's rages have been escalating the past few years, one of her favorite things to do is to kick. Long ago, I said to be careful of mommy's bad knee, showed her the scars from my knee surgeries. Guess what happened. You're right, she started to go for my knee. It is similar to the fact that during a rage, she looks around a room for the things most valuable to the person she is directing her hostility at. If she is mad at one of her siblings, she will look for an art project they made, or one of their favorite toys.

I have been very careful not to mention mommy's bad knee again. It often comes into my mind, as I am kind of paranoid- but I have learned my lesson. I did receive a good kick to it just last week, but I suppose this is better than the good knee. After all, we all need one good knee.

Monday, August 16, 2010

6 times a charm?

I have had 5 knee surgeries, on the same knee. The same knee has been bothering me all summer. I have not been able to bend it all the way back and have struggled on steps from time to time. Last spring, I had started to run again, then I stopped. Partly due to the knee, mostly due to laziness.

It has been bothering me more the last few weeks and I shall avoid the Dr. as long as possible. He guaranteed me last time that I would be back before I hit knee replacement time (which I am guaranteed to need in the future). Last time I had surgery, 6 years ago this month, I went into it not knowing if I was just going to have it scoped, or have part of my tibia sawed off and some fake bones or other yucky sounding stuff put in it, which would have resulted in two months of crutches. Praise the Lord they got in there and only had to scope it. My mom was sick with cancer at the time and my children were 1,2,3 & 4 (and Zeke, who was 1, was a sick preemie with tons of appt's), I was not looking forward to two months of crutches- been there, done that.

I am truly praying that I don't need another surgery. For some reason I think of myself as a healthy person, yet I have had 10 surgeries in my short life (ha) and I am not ready for the eleventh surgery. They have all been minor stupid ones, but the last several, have taken me longer to recover from. I wonder why that is? I had surgery when I was a child and swallowed a penny which got stuck in my esophagus. I had the first 3 knee surgeries in high school, one in college. Those were all a breeze to recover from.

The last several, thyroid, tonsils, appendix (you would think I would be losing weight with all my internal organs they have removed!), the recovery was not as easy. I want to be done, at least til my 60's or later, when I have in my head I will need a new knee. Enough whining. I am off to ice the knee.

Friday, August 13, 2010

Oops, my bad

Wednesday morning, I was at the grocery store and Akila's Sewing and Quilting teacher called my cell phone. Evidently Akila was having a hard time using the equipment safely, mainly the scissors and needles. She was sliding the open scissors along her face and arms and poking herself with the needles. This problem had started on Tuesday, but had not stopped. The teacher said she may have to have Akila just work with yarn or something if she couldn't use the equipment properly. I supported her in that idea, and talked with Akila.

On the way home from the grocery store, I remembered that I had forgotten to give Akila her meds in the morning. Oops, my bad. About an hour later, the Associate Principal called and Akila was in her office. I had to go pick her up. Oops, my bad.

As I met with the principal, I mentioned that we were doing some med changes, which was true. That day, Akila was suppose to start a new dosage of Concerta. Oops, my bad. The principal asked me why Akila did not have an aide working with her. I said I had no idea, and asked if I was suppose to request one. She said no, and I asked if it was too late. She said no, and yesterday a person started working with her, which is fantastic! The session goes next week also.

This program is not summer school, but more summer enrichment, and she does not qualify for special ed summer school. We are doing the 3 year evaluation for her IEP in the fall and I am going to try to get some language in it about after school and summer activities at the school, and them supplying an aide.

When I ran inside to pick Akila up, I completely forgot to plug the meter (our school is in downtown Minneapolis). I was gone for 8 minutes, and I got a ticket. $42. And of course I was annoyed with Akila about this, when really, if I had given her meds, we might not have been in the situation. Oops, my bad.

Tuesday, August 10, 2010

Hit the water!!!!!

The kids had swimming lessons yesterday from 4-4:40 at an outdoor pool here in North Mpls. I went to pick them up and sent them into the locker rooms to get dressed as we were going straight to VBS (a VBS that runs Sun-Thurs and serves dinner- NO COOKING all week- yahoo!). I was in the locker room with the girls waiting, and when they were done we walked out the front door to meet the boys. There is a garage door that they pulled shut when the pool is closed, and the garage door was closed and we were locked in.

There was no staff around in this front area, nobody in the window where you usually pay. Another mom came out of the locker room and I said the door was closed and she said we were in a "lock down" as there were gun shots in the parking lot next to the pool. I said really, I didn't hear anything. She said there were 3 or 4 gun shots. I did not hear a thing. We hear gun shots so often I am almost immune. Not to mention that I have become very good at filtering out noise that I want to ignore due to Akila and her loudness and raging.

So, I had about 30 seconds of panic as I realized that my boys may have been done getting dressed and could be on the other side of the garage doors. The mama bear in me turned on and I went bolting into the men's locker room. They were just getting ready to walk out the door. Thank goodness.

So, we got to stand in the locker room for about 20 minutes as the police came to make sure the danger was over. Do you know how hot it was yesterday? I don't, but it must have been in the 90's, and it must have been close to 100 with all of us crammed in there and Akila getting overly excited and scared all at the same time. I'm so bad, that I just kept on laughing. Then I hear some people who were in the pool saying that when the gun shots were fired, the lifeguards yelled, "hit the water!!". This made me laugh even more. I know, I'm sick. It got even better when they were ready to finally release us and a mom started swearing at the staff that she wanted a refund, right in front of at least 50 kids. And she was really letting the F-bombs fly. I couldn't have gotten out of there soon enough.

Just so you know, nobody was injured. Not sure if they were just bad aims, or if they were just shooting "for fun". North Minneapolis has been a little wild this summer, tons of shootings and deaths. I just walk around looking at all these kids, so many of them that I know have been pre-natally exposed to alcohol. It breaks my heart.

It's not over

Well, Friday came, and I found out my relief over the birthday being over was misplaced. She had birthday money that was burning a hole in her pocket. Some friends and family send cards and money on the kids birthdays, which is totally awesome and appreciated- yet challenging with Akila (note to all of you who do this- do not feel guilty about this, it is just our life).

Akila had been obsessing about the mail all week watching for cards and possibly money. She kind of knows in her head who usually send money and she was eagerly watching for cards. I had told her we would wait until all the cards had come before she could spend her money so she could get something bigger and so we wouldn't have to go to the store each time some came. My other kids usually save the money, but Akila never can. And I usually get to the point where I just want the money to be spent so she can stop obsessing about it.

Well on Friday, she was totally obsessed and going nuts all day about the money. I finally brought her to Target and fronted her the money that she would possibly get from other cards (again people, please do not feel bad- you know who I am talking to) and she bought a Baby Al.ive doll.

Akila also had the entire neighborhood at National Night Out (last Tuesday), sing happy 13th birthday to her. She is 11.

I am pretty sure it is over now. I need an entire year to recover.

I want my stick!!!

I have several blog entries that have been in my mind for over a week. Going to see if I can get them all down today- now that the birthday is finally completely over!

Thursday was Akila's actual birthday. After the party with the teenagers on Wednesday night, my niece and nephew stayed over night. Dan and Tara (their parents), came for dinner on Thursday night to pick up the kids. Akila had had a pretty good day, a couple of pretty good days full of lots of excitement. I knew deep down inside that we were in for an explosion. It happened of course.

A few weeks ago, during a storm, a tree was knocked down across the street from us. My other 3 kids spent an entire afternoon and evening cutting the tree up and making a fort. I gave them all the saws I had, and they worked with two neighbor kids. Akila was not involved at all. The city of course came and cleaned it up right away. When I want the city to get on top of something, it takes them forever. When I want them to hold off, they're here immediately.

My kids asked me if they could bring one of the logs they had cut over to our yard first and I said yes. Little did I know that they brought like 4 huge logs and a bunch of very large branches. This wood sat inbetween our house and the neighbors house for over a week and the kids did not touch it. When Dan and Tara were leaving, Tara noticed it and I of course complained and Tara said they could use it for fire wood as they have a wood burning fireplace.

I loved the idea and we were about to start loading it into their truck when the kids all revolted. It looked like a scene from the news with tree huggers chaining themselves to the trees. The kids were laying on the logs and screaming. Which immediately got Akila "in the game". She sat down on the trees and refused to get off. Tara felt bad and said we could forge the idea, but I said no way, take the wood!!

Akila turned into a great advocate for the trees, which let me remind you, she has had nothing to do with. Before it was over, I had to bring her in the house as she was hitting and scratching and getting totally out of control. We ended up in a restraint and she was crying, drooling and yelling, "I want my stick", "that is my special stick" over and over. Eventually, to calm her down, I had to go upstairs and play Barbies with her (my least favorite thing to do, practically in the whole world).

But at least I was happy the birthday was finally over. Or so I thought.......

Wednesday, August 4, 2010

An idea

I am a youth worker at heart. When I worked with teenagers, we were always trying to come up with creative and fun ways to be of service- I did a lot of service-learning activities with my students. Once we started a program at a high school I worked at where we had an "unmentionable drive" where students were to donate new panties, underwear, bras, etc. for teens in shelters. It was a huge success as it was a little different from the typical clothing drive. Picking up garbage, bagging food and things like that are necessary and good, but not always very meaningful or fulfilling. They can be, but most people like volunteer experiences that involve contact with people.

I mentioned earlier today how the teenagers from the dance studio I work at came to Akila's birthday party. Last year, they came, along with some of Akila's peers. Akila only wanted to play with the teens, and her peers were OK with that as they did not seem to have a "real" connection with Akila (understandably so). This year, I only had the teens, plus cousins and a close neighbor girl. This worked so well.

Akila had a great time, and felt very loved. This group of teenagers, played with her, encouraged her, redirected her, and made her feel really good. I wish all kids with special needs could have "typical" birthday parties with friends. It just doesn't usually work out. But what a great option I have fallen onto with these great teenagers.

If I were still working with youth consistently, I would start up a program called the "Birthday Brigade" or something like that. One thing I hear over and over from parents like me, is how it breaks our heart that our kids have no friends, and this is really evident around birthday time. We would work with some special ed teachers to identify students that might be open to and benefit from having some teenagers attend their parties. This could possibly be the start to some on-going relationships between the students. It wouldn't work for every special needs kid, but it would for some. Akila is still too clueless to realize that she doesn't have any friends who really want to come to her party. The day she realizes this, my heart will break.

My mind is spinning on high as I run this program through my head. Makes me want to get back into youth work, but I'm not ready. Too much youth work on the home front at the moment. Tomorrow is Akila's actual birthday, hoping for a smooth day like today was.

Akila is disabled

Wahoo!! Just got the letter from the SMRT (State Medical Review Team), and they have designated Akila as disabled. Wahoo again. This means she will qualify for MA through TEFRA (we will have to pay each month, but it is worth it).

I will still have to wait for info from Hennepin County to do start the MA process, but this is really good news. The birthday party went really well this afternoon, the teenagers from Dance Endeavors are totally fabulous. They were kind and loving to Akila, gave her really sweet gifts, and made her feel very special.

Two of my nieces (Haleigh and Natalie- yey- I have Natalie to help me again, even if just for one night), and nephew (Isaiah), are sleeping over. So far so good, but we have a few hours left. I am hoping for no meltdown, but if (when) it happens, I will be ready! After all, she is disabled. Wahoo!!!

Monday, August 2, 2010

Bra shopping

35 days. Did you see the countdown to school on the right side, over just a little from this post? Well, it says 35 days. 35 days. 35 days. I'm ready. I have almost even bought all the school supplies. I know, that sounds kind of sick. But I'm kind of obsessed with bargains and coupons, so I have been finding the good deals. I have learned that the prices start going up right now on most school supplies. Get to work moms!

Akila had her first day of summer school, the morning was a little rough, but she got off OK and came home happy. I was able to get a little more done around the house and that was nice. I actually FINALLY threw away a bunch of the notebooks and junk she brought home on the last day of school. I know, sick. But she has been guarding it. And she noticed immediately. Ugh. I had to gather the stuff I had saved and bring it to her, and she was mad it seemed a little short. Recycling was today while she was gone, so I dumped a bunch of it. I told her it was all there. Hopefully she will not think about it again.

She made a bean bag at summer school, her class is sewing and quilting. We had to make one when she got home, cuz she wanted to. I didn't do anything right. I learn more every day that I am not a patient person, much like my mom was. I have no patience with teaching cooking, sewing (which I am not gifted at, either of them actually), and stuff like that. It was a long afternoon.

While she was gone this morning, Imani and I went bra shopping, both girls are at that age. They have been using training bras, and needed the next level. They wear the same size, and bring Akila bra shopping does not sound like fun to me. Akila constantly takes Imani's bras and she can never find them. We bought some for both of them, and Imani's are locked safely in her lockbox in her bedroom. How sad. We talked about how when she takes them off, she needs to put them in the box, and I will go into it on a regular basis and wash them. If she puts them in the hamper, Akila will take them. Poor girl, what a life. But she is great with it.

Sunday, August 1, 2010

Birthday Sunday

Akila's birthday is on this coming Thursday. I'm ready for it to be over. We have a tradition in our family (that we started before we were familiar with the FASD beast {I mean FASD is a beast, not Akila}) which entails the Sunday before a birthday being "Birthday Sunday". This is when we mainly celebrate the birthday if it falls upon a week day when daddy is working. On birthday Sunday, the birthday kid gets to choose a restaurant and an activity, and gets the choice to open presents that day or on their birthday. Believe it or not, some of my kids have chosen to wait til their actual birthday. Not Akila.

She obsessed yesterday about her presents and begged ALL DAY to open them, or just one, or just two, or blah, blah, blah. I would have preferred to just give them to her, but Michael wanted me to wait. That was fine. I did break down and we made a birthday cake last night. That seemed to pacify her. We usually reserve the cake for the actual birthday, but we can have two this week, I don't care. Everybody loves cake!

Last night, I told her that she could not wake anyone up until 8:00 am to open presents. It might as well have been Christmas morning. I am so glad I remembered to tell her that. As she woke us up at 8:00 sharp. I was proud of her for waiting. Not sure what time she got up though. She opened her presents, played with them for a bit, and was ready to go.

She usually chooses Red Lob.ster for lunch, but I am not a big fan. I don't like any kind of seafood, and have never been impressed with their non-seafood choices. I talked her into Bubba Gu.mp Shrim.p at the Mall of America and it was awesome!!! The food was great, and the service was excellent. They have license plates on the table that say "Run Forest Run" and "Stop Forest Stop". You flip it to the stop if you need something and someone comes right away. Well this is fantastic for a family with a special needs child. They came every time, right away. Not that we used it too much, but it was nice.

Then we rode a few rides at Nick Universe, and when it was time to go, we had no problems. Nama Kathy (our neighbor who is like a grandma to the kids), had presents for Akila so I told Akila it was time to go home to see Nama Kathy. She bolted out of that place like never before. Came home, opened Kathy's awesome gifts, and played the rest of the day. She even played with Imani and the neighbor girl pretty nicely all afternoon.

But I am glad the anticipation part is mostly over. She just can't handle the excitement, she goes totally bonkers and so do I. Wednesday is the party with the teenagers, and Thursday is the real birthday, but it will be somewhat anti-climatic. Not sure if she gets that. I have explained it a million times, that she will have nothing fun on her birthday now, but I"m sure she doesn't totally get it. She does get to choose the meal I cook on her birthday, and we will probably have some cake.

She starts a summer school class in the morning for 3 weeks, I am looking forward to it. I can already tell she is going to be fighting me on going. She has been talking about it all summer, wanted to sign up, chose the class herself (sewing and quilting), but was fussing about it tonight. I think she is too worried about missing out on excitement at home. Like we will be partying the whole time she is gone. More like we will be trying to get some things done and having a bit of time with no craziness and conflict.