Looking back

Last night, I was at my neighbor's house doing some cleaning for her (be quiet everyone, I know my house is a pit! And I am not going to come clean your house so don't ask. Of course, unless you pay me). I brought Akila with as she has a VCR (ours broke 3 years or more ago), and Akila use to always watch home videos of when she was a baby. She calls them "The Akila Show". Someday, I will get them transferred to DVD.

So I was in the kitchen cleaning (Kathy had her kitchen painted and a new drywall ceiling put in, so there was lots of dust). Akila was in the next room watching the video. It was not annoying at all to listen to myself and Michael in our most annoying baby voices for two hours, going on and on about nothing! She was our first child, and we had that recorder on all the time. For 30 minutes waiting for Akila to say something, or do something cute. Way too long. But she loves watching it.

She calls it the Akila Show, even when Imani and Hezekiah are in it. Zeke isn't on the VHS tapes, we got a new one by the time he came along. We did not figure out Akila's FASD until she was 6, in first grade. When she was probably 2 years old, I always thought there was something off with her. Before 2, I didn't have too many concerns. She did have some very fussy times as a baby- we got her at 5 weeks old. But she hit all the developmental stages on target.

By 2, I knew there was something off. This is when our Pediatrician would always tell me she was fine and to relax. Then, we adopted Zeke when Akila was 3. He was my preemie who was very sick. We were in and out of Children's Hospital and that is when I fell in love with Children's Hospital and Clinics. We switched to a Pediatrician there and on her first visit with Akila, before she knew I had concerns, she caught some warning signs and sent us to a Neurologist. Akila was then diagnosed with Turner Syndrome- we thought that answered the questions regarding her odd behaviors. Little did we know.

Anyway, back to the video. Watching it, or should I say listening to it, and knowing what I know now about FASD, the signs were all there. This is what bums me out about the fact that we still do not adequately train adoptive parents as to what to look for. She was a camera hog, and wanting all the attention constantly. I know, some of you are saying that your typical child did the same thing. Stop. It is very different, and I don't know how to totally explain this. It is over the top camera hogging. It is a glazed over look on her face when she hits baby Imani and is told "no" and "to be gentle", and does it again. Obviously, situations like this, are common with typical kids. But there are no episodes with my other kids doing this stuff on the videos. And if they did, they were more likely to stop when directed to.

There is an intensity about her that you see in these videos, that is still there today. I did have something in my stomach telling me there was something wrong. But I did not know enough what to be looking for. Akila was diagnosed by age 6, which is one of the protective factors that Dr. Anne Streissguth has studied. I do wish we had figured it out earlier. It would have saved several years of banging our heads against the wall. We tried techniques that work for typical brains, but not for the FASD brain. We could have saved a lot of stress, a few pounds (maybe), and a lot of anger.

We really need to start training adoptive parents on some of the early signs of FASD. The truth is that you don't always know if there was alcohol exposure during pregnancy for a number of reasons. I have had an argument with an adoption proponent who thinks that too many people would back out of the adoption process if they were more informed about FASD. I say, that those are the people who should not be adopting then. And I truly believe that the majority would still be interested in adoption, they would just be entering it with their eyes open.

Regaining sanity

Well, that may be a little strong. I'm not sure if I am regaining sanity, but I do think I am coming out of a fog. Summer was long. Summer was hard. The very end of summer was really hard. The very beginning of the school year was really hard. Thankfully, some resources I had been working on for nearly a year finally came into place. And I am so grateful.

As I said in last post, the PCA's have started. I am doing the PCA Choice program where I hire, train and supervise the PCA's and an agency basically just pays them and makes sure we are in compliance. When recruiting, I sent a Facebook message out to all the twenty somethings I know plus a few mature people who are connected to a lot of twenty somethings. I received a pretty good response. I was so thankful.

One of my former Bloomington students, who's older brother was one of my students as well, responded right away. Her name is Behin and she is fantastic. She graduated from the U of MN last spring and just started her PhD program in Psychology this September. She said that she could do one day a week and her roommate could do another day. I was looking for two evenings and occasional weekend hours. Perfect.

I also got a response from Ness, who is Bernard's oldest daughter. Bernard is my friend who died in April of 2008. He was a single father of four awesome kids. Ness is a student in her 2nd year at Carlson School of Management at the U of MN. She is doing some various weekend hours and she is awesome!

Charlene is Behin's roommate. I did not know her, but trust Behin completely and Charlene has been awesome. She is great with Akila. Char also graduated from the U of MN last spring, and after working a few weeks with Akila, got a real job. I am happy for her, I know how good it feels to have a real full time job instead of 3 part-time jobs. She is still going to do Tuesday evenings. I bring Akila to dance class, drop her off, and Charlene picks her up from class, grabs dinner, and brings her home by bedtime. Nice.

When Charlene got the new job, she referred one of her and Behin's friends who lives in the same downtown condo building, who could do Monday nights. I was looking for help on some Mondays as well. So I met Jen and she is fantastic and is bringing Akila to dance on Monday nights. Jen is also a student of the U of MN (you'd think that I am only choosing U of MN students since that is where I went, but I'm not!) and will be finishing up after this semester.

The last several weeks have been lovely. They have been amazing. We have had at least two evenings a week which have been calm, I have been able to focus on the other 3 kids, help with homework, get things done, relax. I think I have been in recovery mode. It is almost like recovering from PTSD or something. It was getting that bad.

Now, it feels like when Akila is home and there is not a PCA, I have more energy and patience, she is not quite as snappy and sick of me, and we are not having nearly the same level of power struggles. This just might be a honeymoon phase, but I'll take it. I was telling Behin last night that once Akila is more use to them all, she will more than likely not behave as well for them. I hope I am wrong, but I'm pretty sure I am not. It is actually a good thing that there are 4 of them spreading out the hours, instead of the same person 3 days a week. Akila would tire of them and get much more edgy more quickly then.

I also got word on Wednesday that we have been approved for a grant to put in a security system in our house that will have an alarm go off if when Akila opens a door in the middle of the night. We had tried the cheap versions, but they fell off and wouldn't stay on our old house doors that were not level/plum/whatever you call it.

So, finally feeling like we are getting help. Feeling horrible for my friend Dorothy in Colorado who is finding it hard to get help. Trying to remind myself when I get frustrated with our system in MN, that it is really a much more supportive system than a ton of states have.

Update

I have not felt the words lately. Things have been happening, all is fairly calm, but I have been just kinda pooped out. But I thought I should do a few updates.

• Hezekiah turned 9 last week and Zeke turned 8 yesterday. My kiddos are now 8,9,10,11. Easier to say and remember. We went out on Sunday to Olive Garden to celebrate Zeke's birthday and I forgot to give Akila her meds. She was completely nuts in the van and the first half of the restaurant she was bouncing off the walls, until the meds she had when we got some water, kicked in. A good reminder to us that these meds do help greatly. Boys had great birthdays and we are blessed to be their mom and dad.
• The PCA thing has been fantastic!!!! They have been working for a couple of weeks and I can't tell you how much of a difference it has made in the climate of our house. I feel like it has even helped to improve my relationship with Akila as there is not constant conflict since she has a one on one person giving her complete attention. I feel like I have more patience and energy for her, and also for the other kids. There is usually one or even two evenings a week when they pick her up from school, bring her to dance and hang out with her and bring her home close to bedtime, after they grab a bite to eat. It has been such a blessing!!!!! We are only using up to 17 hours a week, but we have four different women on staff. And they are all awesome! One is a former student, two are friends of hers, and one is a daughter of an old friend of mine whom I miss dearly (my friend Bernard who passed away a few years ago).
• I have been volunteering a ton at Children's Hospital and Clinics. I was there 6 business days in a row. Three days on one of those Lean committees. That means 8-4:30 for three days working on setting up a process for inpatients to receive a discharge phone call within 24-48 hours of being discharged. Sounds easier than it is. Then I was at a meeting for the Star Studio (their inhouse TV channel) Advisory Council, Friday I spoke to medical residents about family centered care, and Monday I spoke at the new employee orientation. I am back tomorrow for my favorite one, the Medical Home committee. I have been greatly enjoying my time there (although it has been over kill the last week plus, but that is not normal. I am usually there every other week for one meeting/speaking event). Children's is a wonderful place to get excellent care for kids. They have been a real blessing to my family and it is nice to give back. Plus, it is my time to be around adults and use a deeper part of my brain that does not get accessed enough at home.
  
• Akila has been doing pretty well in school, and for that I am quite thankful. Her 3 year eval is complete and I am hoping that things won't go downhill as they usually start to do each year in November/December.
• The morning and 3:00 dosage of Risperidone seems to be working very well. She use to take one in the morning and at bedtime. This time change seems to have made a big difference in her evening mood.
• As I type, a new dishwasher is being installed. This means that we have replaced all the appliances in this old house and nothing should ever break again!!!! Please.
• We especially can't afford anymore appliances to break down, as our health insurance is going from $777/month to $1127/month. That is not a typo. It is going up $350/month. This means our van better keep running, as $350 is a car payment. It will also be covering less. I can't say much else about that without risking swearing and getting quite upset.
• My job as office manager of the dance studio is starting to get busy with costume ordering time, winter show prep, and quarterly tuition due. This is in part what has kept me from having the energy to blog. I get sick of the computer.
• I have been slowly reading a book called "The Normal One" about siblings of damaged kids. It is pretty interesting, not sure I agree with much of it, but it is very good at giving me perspective and making me think about my 3 musketeers and what we need to be doing for them to minimize negative effects of life with Akila, and try to focus on the positive effects.
• I got word today from Hennepin County that we are receiving a grant to install a security system so we will be awakened in the middle of the night if a door is opened. I am very relieved. Akila has been sleeping fairly well lately, but that will only last a certain amount of time.
• I have been thinking often lately about how it seems like Akila has regressed developmentally in the last year. She plays more with dolls than ever and she is drawn to preschool based cartoons. We went to a local hamburger joint this weekend. They had a little section of toys with things like a kitchenette, grocery cart. Akila sat and played with it all the entire meal. It was odd to watch a middle schooler. She then threw a rage the next day when Zeke chose the Olive Garden as she wanted to return to Tooties to play with the toys.

I think that is all for now. Hopefully I will get back in the flow with the blogging. :)

Pretending

Today, I have been pretending to be wealthy- kind of. I had to bring our 1999 mini van in a few weeks ago for some work. When working on it, they disabled something in the electrical system and our sun roof doesn't work anymore. It is the only thing that makes this 11 year old van feel nice. The problem they worked on with the engine, also didn't seem to be fixed.

I brought it back yesterday when it was smelling like the engine was burning, and I was given a rental van. A 2011 Honda Odyssey with 800 miles on it. The kids and I rode around all night in it, using the seat warmers and trying out the reverse camera thingie. I have been putting off returning it all day.

I went to the spa at the health club where we have a membership. Normally, I get my haircuts at the Aveda Institute, for very cheap. And I buy groupon discounts to get gift cards at Aveda for 1/2 off, that is how cheap I am. I kind of wanted a little bit of a new hair style, and I don't like to trust the students with that. So I used my gift card at the "spa". It was a good haircut, and I felt very important driving away with my fancy hair in the fancy car. And then I drove to Rainbow and used all my coupons for double coupon day. The dream had to end, right?

I will return the van this evening, and pick up our 1999 Honda Odyssey that has over 165,000 miles on it. The one that stinks, has vomit stains, the B word written on the seats, several soda stains from rages, broken knobs, broken dials, broken doors. And we will try to get as many miles out of this van as we can. After all, our car payment budget will be going to health insurance starting in January. Our health insurance is going up from $777/month, to $1127/month, and they will only cover 75% after we meet our HIGH deductible, instead of 80%m and Rx's are way more. Kind of thinking Health Care Reform is not helping our family. Ouch.

Alcohol worse than crack

I remember when I was first learning about Fetal Alcohol Spectrum Disorders (FASD) and how damaging alcohol is on a fetus. It was when Akila was in 1st grade. It was an eye opening year as I did a lot of research and went to several conferences.

I remember being really shocked that alcohol is more damaging to a fetus than almost all street drugs. This is something that people are still in shock about when I talk about FASD, I often think that some people don't believe me. I invite them to live with us for a week.

Anyway, check out this article, in which

Drug Experts Say Alcohol Worse Than Crack or Heroin.

This is not in regards to a fetus, but in regards to the person drinking the alcohol. It is even worse than crystal meth. I have been wondering if meth is possibly more damaging on a fetus than alcohol, but I haven't read anything on that yet. Does anybody out there know? All my FASD experts!!!