Thursday, April 26, 2012

Getting Ready

I'm getting ready to go to see Akila in the morning, and I am so excited I can't explain it.  I really miss her.  The kids and I will leave after we wake up early, and we have a meeting in the early afternoon with her team- the 30 day staffing mtg.  Michael could not take the day off work, so he will call in for the meeting.

We are staying overnight in a hotel, and Akila will stay with us.  The 3 kids are really excited, and not too sad about missing a day of school either.  I am excited, but hoping that the headache I have been fighting today goes away by morning.  Going to bed now.  Will try to post some pictures.

Monday, April 23, 2012

Hard to find the "right" word

It is weird.  To feel almost "normal".  Maybe "typical" is the better word.  That doesn't work either I guess.  I know many people get all squirmish over the use of the word "normal".

I am a mean friend.  I texted Dorothy and Julie one night last week.  My text said something like, "my life is so easy right now".  It doesn't feel right.  Yet it does.  Maybe I should go and find my old friends who have "normal" or "typical" families.  It has been hard to fit in with them for years.    That was a mean text, as with their 11 kids each, their lives are anything but easy.  Quite the opposite as a matter of fact.

I don't feel guilty that life is "easy" right now.  I'm not sure if "easy" is the right word either.  I can still get emotional in a second flat about Akila not being home.  It is not at all "easy" for her to be gone.  So I guess "easy" isn't the right word either.  Maybe I should go with "different".  It does feel "different" to have her gone.  Yeah, that's it.  That's the ticket.  It is "different".

It is not easy.  Or typical.  Or normal.  It is far from it to be any of those words, when your daughter is living 4 hours away in a place where you don't know the people.  It is not typical.  Or normal.  Or easy.  To talk to your daughter on the phone each night, and to not have seen her for 26 days.  It is not typical.  Or normal.  Or easy.  To talk to her and have her be in the best mood you have heard her in for months.  Years.  It is so different.  Very different.

Friday, April 20, 2012

3 weeks down

Akila has been in the RTC for 3 weeks now, and I am much more emotionally stable.  The Lord has sustained me and made this transition easier in several ways.

One, was His timing.  She left the day before spring break started.  It was nice to be able to organize a spring break for the kids that did not depend on Akila and her issues.  They got to be typical kids for the week and it was fun to watch.

Two, is Akila's attitude.  She still continues to be positive.  It is like she is at summer camp.  This has honestly not hurt, like some people assume it might.  I know her brain too well to be offended that she is not upset to not be with us at home.  I also know it is only a matter of time before she starts to be mad that she is there.  It has been a joy to talk to her on the phone, and the kids and I are going to visit her next Friday and staying overnight at a hotel.  I am looking forward to this, and so is Akila.

Three, is time.  I feel like I have had more time, and am getting caught up on some things.  I am caught up on my dance work, I had a pile of paperwork (calling insurance companies, clinics, research projects, etc) that I have caught up on.  I still have a huge list (in my head) of things I want to get done (reorganizing drawers, cleaning basement, etc.), but I don't feel stressed about it anymore.  I feel like I will be able to tackle some of these things.

It is actually a weird feeling, to feel typical.  Well, actually, I don't feel typical, probably never will.  But it feels weird to not live in constant drama.  I am not a drama queen, I do not seek drama out like some people I know.  I do know a mom who has a daughter with FAS, and this mom is addicted to the drama her daughter brings.  She is the type of person who wants people to feel bad for her at all times and when her daughter is in an out of home placement, she misses the drama.

I do not.  But there is certainly an adjustment period to not dealing with the drama daily.  This feeling is similar but different to when my mom died 7 years ago.  She spent the last three months of her life living with us, and was sick for 11 months.  My every waking minute (and many of my sleeping minutes), were consumed with caring for her, fighting for her, loving her.  When she passed, I was a zombie for sometime.  Not only due to losing her and dealing with that grief, but also from the change in a daily routine that I had become accustomed to.

I am thankful for how the Lord has sustained us.  I am thankful for how He has watched over Akila and protected her.  I am thankful for so many of the details that He has worked out.  I am very thankful and blessed.

Thursday, April 19, 2012

Psychiatry update

I was on an adoptive parent panel today at a conference, called a Psychiatry Update for Primary Care.  Akila's Psychiatrist, Dr. Elizabeth Reeve was on the planning committee and one of the main presenters; she invited me to be on the panel.

The other two parents and I followed Anne Gearity who is an expert in adoption and attachment, she gave a great presentation.  She has a training manual which is called "Developmental Repair: An Intensive Treatment Model for Working with  Young Children Who Have Experienced Complex Trauma and Present with Aggressive and Disruptive Symptoms".  It is available here free for families and professionals.

The panel went really well, and as I was reading the audience, it seemed like they were very attentive.  They are all doctors, nurse practitioners or medical students.  Several came up afterwards to talk, ask questions, thank us.  Dr. Reeve came up, and she was wiping away tears and she said she wasn't the only one crying.  After lunch, she came up to me and said that as I was talking, it struck her that the meds she prescribed had not helped.  It was not for lack of trying, we tried a zillion different ones and she was always open to changing.  What I told her, is that they all worked- FOR TWO WEEKS.

I talked several times of the importance of diagnosis.  It was nice to be able to share with an important group. Crossing my fingers that people heard what we were saying!

Wednesday, April 18, 2012

FASD awareness event, May 18

I finally figured out how to post a PDF to my blog.  Hooray for me.

My friend Jerrod Brown has been planning an awareness event for FASD and it is coming up next month.  Here is a link to the flyer, I still don't know how to make it appear on my blog (other than a screen shot, using Paint, which I find to be tedious).

The event is May 18th from 11-3 at Concordia College in St. Paul.  I will be doing a presentation at it, and there will be live jazz music, games, prizes, speakers, etc.  I hope you all can come!!!!

Monday, April 16, 2012

Anticipating summer with joy

I wrote yesterday about trying to enjoy the little things during Akila's absence.  I did not mention them all, but just gave you a sample of the little things.  There is also a big thing that I want to write about.

Summer.  I have dreaded it for years.  Strange, since it is by far my favorite season.  I grew up on a lake, we had a speed boat.  Water skiing was something I loved, and just about anything water related.  I enjoyed summer during college, even though every summer I took summer classes and worked.

When I started my professional career after college, I worked for Community Education (CE).  If you work for CE, that means your summers stink.  You are in charge of all the programs to keep the kids busy while school is out.  Summer was intense, very intense.  10 plus hour days, and plenty of weekends.  Lots of stress.  Then we started adopting kids.  One each year for 4 years in a row.

I didn't quit working full-time until we adopted our 3rd child, Hezekiah.  Then I worked part-time for the National Youth Leadership Council directing a week long intensive program for high school students called the National Youth Leadership Training (a fabulous program by the way, that I think all high schoolers should try and attend!).  Directing this extremely intense program, on top of having 4 tiny kids, was crazy.  I did that from 2002-2006.

2006.  Six years ago.  That is when Akila was diagnosed with FASD, right after my mom passed away.  Every year since then, she has become more challenging, and some of her challenges, have made summer hard.  Very hard.

For the first time, I am looking forward to summer.  Yes, I have some pangs of guilt with this feeling, even when I know it is OK to feel like this.  But it is very hard to explain the excitement I have for this summer.  Looking forward to some lazy days, lots of beach days, long bike rides, road trips, hopefully a little water skiing (my knees can't handle much after 6 surgeries, but I don't tell my Orthopedic Doc that I even try), time with friends, etc.

Normally, at this time of the year as summer is quickly approaching, I am starting to feel a yucky feeling in the pit of my stomach.  Getting anxious and seeking out programs to sign Akila up for, which she ultimately refuses to go to.  I was looking at the calendar earlier today to see how much of school is left.  I did not have an icky feeling.  It felt good.

Yesterday, I was looking at the little things.  Some people might say that anticipating summer is a little one.  For me, it is a big one.  First time in over 20 years that I am looking forward to it.  Even if it is a flop (pray with me that it isn't!), I am going to be thankful for anticipating summer with joy.

Sunday, April 15, 2012

The little things

I truly miss Akila, but I have been able to be more accepting of the current situation every day.  I am thankful for the Lord sustaining me through this season.

I am not happy about it, and I don't take pleasure in her absence, but I have to admit, there are some little things that are making life more simple.  Here are a few:

  • Yesterday, I dug out the butcher block from the basement and put the knives in it.  Took the scissors our of the lock box also, and put them in places with easier access.  Typical places, like in a drawer, in a cup on a desk.
  • I tied a head scarf on Imani tonight.  She does not wear one every night, and can do it herself if she does. But I tightened her dread locks tonight and wanted them tied well this first night so the goop has more time to set.  She did not hit me or yell at me as I tied it on her head.
  • I have not been locking up my make up.
  • The kids put their allowance money in their bedroom, and were excited they could just leave it on their dresser in plain site (instead of in their lockbox).
  • I have been able to come and go as I please.  I have met my friends before bedtime, I have been able to say yes to speaking engagements in the evening without figuring out if I have a PCA.
  • Our schedule has been vastly simplified.  Not having to schedule 3 different PCA's, appt's, etc.
  • Sleeping in.  This is something I love to do.  I am a night owl, big time.  Akila has always been my alarm clock.  She could not be awake with me sleeping.
I struggle with enjoying these little things.  I am happy to make accommodations like these so Akila can be apart of our family.  I will do it again in a heart beat, if the violence could be tamed.  All of the things I have listed above, are trivial.  I would take her back in a heart beat, if she would stop beating on all of us.  But that is not in the plans at this moment.

So, in the mean time, I am going to enjoy these little things.  I know that when she eventually comes home for visits, we will have to lock things up again, and make some changes.  But part of this current situation, means that we can have some respite, and some peace, and enjoy the little things.  I no longer take for granted how easy it is to just grab a scissors when I need one.  There are so many things Akila has taught me to not take for granted.  She is a blessing.  

Thursday, April 12, 2012

Counselors in training!

One of our PCA's is doing a class project on FASD with a friend of hers, they are both Family Social Science majors at the U of MN.  They came over last night to interview me about FASD, and the family impact of it.  It is suppose to be a 5 minute video they need to make.

Poor women.  They were here for 2 hours listening to me babble about FASD.  They didn't video all of it, just a short period.  But once you get me going, it is hard to shut me up!

Whenever I encounter young people in college who are majoring in human service fields, education, or medical areas, I just can't keep my mouth shut!  Since basically none of the college programs have much info on FASD, I have a personal agenda to get as many people as I can to go through their college program with their own personal FASD focus.

And these two young women are fabulous, so say a little prayer.  I am trying to get some therapists/counselors who would be specific to FASD, and have an interest, compassion and intentional outreach to families like mine.  I still contend that if someone went through a counseling degree program of some sort, and really learned about FASD through choosing it as a focus on papers, speeches, videos, etc., did some PCAing for children with FASD, they would be amazing resources and their schedules would be jam packed!

Wednesday, April 11, 2012

Real life buds

I mentioned yesterday that I am thankful for blog buds.  I am also thankful for real life buds.  Two of my IRL buds, have been absolutely amazing and supportive over the past 6 plus tough months.  Julie and Dorothy have had late night meetings with me, sometimes weekly, sometimes bi-weekly, whatever we could fit in.  

Julie is an amazing amateur photographer and she is great.  A few weeks ago, she took pictures of my kids and of our entire family.  She and Dorothy surprised me with a shutterfly book.  I photographed a few of the pages and they are below.  They also had a canvas portrait of Akila's picture made which is the bottom picture.  I am truly blessed beyond words.

Tuesday, April 10, 2012

Thankful for blog buds

Some people blog every day, even more than once.  I go through spurts.

As I have mentioned, blogging has brought out the emotions in me during this most current painful phase that we are in.  That is part of the reason why I blog, as it is a great way to process things, to get my feelings out, to find people who can empathize or relate with me and any of the situations I write about.  I also do it to bring awareness of the complexities of loving someone with FASD.

Sometimes, when I don't blog, it isn't because of emotions related to a particular situation.  Sometimes, I am just feeling swamped and don't put the time into it.  But I do love it when my blog friends wonder how I am doing if I am silent, and even get worried.  I love this because it shows what a caring community we have created in our mini-blog network.  I get it.  I have blog buds who I worry about if they are silent.  One that usually blogs every day, hasn't blogged since a hard post and I am praying for her.

When we first started this FASD journey, I was seeking a support group, a real life one.  Couldn't find one.  There are ones now, and I go sometimes.  But I was able to get my need met in many ways, through this blog and through all of your support.

I am doing much better each day since Akila has been gone.  She has been gone 12 days.  It still sucks.  It still hurts.  But it feels right.  I do appreciate all of the emails I have received, the emails that have been sent, the real mail that has been sent.  You are all so thoughtful.  So kind.  So loving.  It is amazing.  I am truly blessed.

Pap smear opportunity

I'm leaving shortly for my annual pap smear.  Too much info?  It is a fact of life, one I truly look forward to.  NOT!!!

But I am asking for prayers as I have put together a packet of info to give my OB/GYN on doing an FASD training at Park Nicollet in the OB/GYN dept.  Hoping she will help to get me in.  I'll have to wait for just the right moment to ask her, at what part do you think I should ask?  Just kidding!!!!

She is a fantastic doctor.  I got her right out of med school over 17 years ago and loved her instantly.  Now she is listed as one of the top docs always and is hard to get into.  A few years, I gave her the Damaged Angels book to help her learn more about FASD.  She read it and called me to talk about it even.

So cross your fingers, say a prayer, OB/GYN's are just about the most important type of doctors to get the word out to about this public health dilemma.

Monday, April 9, 2012

Something so right feels so wrong

Blogging has been painful, hence I have ignored the blog.  I feel like it has been a whirlwind since we brought Akila to the RTC on March 29th.  The day after we dropped her off, I was in a fog.  The following day, the kids and I went to a resort up north for 3 nights and 4 days.  After that, we had a zillion different sleep overs and tons of playing with neighborhood kids.  It was a busy spring break.

Today, the kids are back in school for the first time since Akila left.  It is bittersweet.  It is nice to have some time alone finally, but it is also making me reflect, which is a good thing.  Especially after a beautiful Easter day which is such a great reminder of God's love and ultimate sacrifice.  My sacrifice is nothing compared to His.

What keeps going through my head, is how something so right feels so wrong.  That is a song, isn't it?  Pretty sure it is.  There is no doubt that we needed to find a placement for Akila, as her behaviors were out of control and getting dangerous.  But I hate the only option we were given, that is part of what is making it feel so wrong.  I do know it would feel wrong and icky, even if she were in a group home in the Twin Cities, which is my first choice.

We asked the kids individually this weekend how it feels to them with Akila being gone.  They all pretty much said, weird, but good.  I get that.  They were able to have an enjoyable spring break filled with friends and fun.  Without the drama.  Without walking on egg shells.  Most importantly, without the scary violence.  They had friends over, and went to friends houses.  They played with the neighborhood kids non-stop and the neighborhood kids were able to come in and out of our house.  None of this could happen if Akila was still home.  So sad.  Yet, so right.

I spoke with Akila on Friday, and she told me she had been sent to the RGR.  This means the Re-Grouping Room- essentially the time out room where they are sent when they are acting icky.  It is a room that is staffed and monitored.  I asked why and she said because she was being rude.  I asked what she was mad about and she said the staff were giving her attitude so she gave it back.

Once again, I hate being in the icky state of being relieved that she is acting up.  My first choice, is that she is healed, and stops acting icky (I know "icky" is my word today- maybe I will title this post "icky").  But if she isn't "healed", I need her to act out at the RTC so they can see the issues and give an accurate assessment of what type of community placement she will  need when her time there is finished.

I spoke with her yesterday also and she had been to the RGR on Saturday, twice I think.  Not sure, as she seems unclear on the days and times, which makes sense.  Nonetheless, she was really upbeat on the phone, as a matter of fact, she has been every time I have talked to her.  No whining or complaining.  She is loving the school, food is great.

I was nervous yesterday about talking about our Easter and traditions, but she asked about them and was really happy and sweet.  She asked if we had cornish game hens (which is our tradition), and we said yes.  She asked Imani if they were good and Imani said yes and Akila was genuinely happy.  She asked about the egg hunt and was happy about that also.  They did have an egg hunt at the RTC.  They had some things in some of the eggs like an extra phone call, or a night they can stay up late.  I thought that was a good idea.  She got 4 extra phone calls and 2 late nights.

I was so thankful to the Lord when we got off the phone with her.  I had a pit in my stomach all day yesterday  because of her absence on a special day.  I was worried about how to handle the call with her.  But He took all my worries away by having her be so sweet and positive.  Once again, it is like we are getting to enjoy her, even only on the phone so far.

I remember this when she was in the crisis home.  Although the phone calls were not enjoyable after the first few days, every visit except one was great.  We were able to enjoy Akila and improve our relationship.  This is one of the things we wrote in the letter to Hennepin County when we were requesting out of home placement.  Akila desperately needs to have a positive relationship with those who love her the most, which is us.  She needs us to be able to advocate and fight for her, and we will do this no matter what, but it is harder to do when she is living at home and beating on us constantly.  She beats the fight right out of you.  Wow, that sounds strange.

So, God has been faithful.  He knows when I need to be filled up, and He did that yesterday.  I am grateful to have a God who is always there for me, and who made the ultimate sacrifice for someone like me who does not deserve it.

Friday, April 6, 2012

One moment to the next

I hate having Akila so far away.  I know that she can't live in our home anymore, but 4 hours away is ridiculous.

We are having a nice spring break.  The weather has been beautiful and kids have been playing with friends a lot.  I haven't cried for two days, so that is good.  Still having huge waves of sadness.

One moment, I am folding laundry and get choked up over Akila's clothes that are still in the laundry pile.  The next moment, I am thankful that I don't have to lock up the knives anymore.  One moment, I am sad when I walk by her room.  The next moment, I am thankful that I have been able to sleep in.  One moment, I am sad when I have to empty out her backpack from her last day at school.  The next moment, I am thankful the kids are able to have a friend over to play.

What is really strange, is that there are a few parallels to when a loved one dies.  I am not trying to be overly dramatic, and I know this is not nearly as serious as losing someone you love to death.  But I remember the waves of emotions that would come over me after my mom died when I would see something of hers.  I feel similar feelings with Akila, although I know she is just gone.  It is just so unnatural to not have your child with you, or at least close enough to visit.  And it has only been one week.

I did not speak with her tonight, nor on Sunday night, but have talked every other night to her.  She is still happy, although the last three phone calls she has asked when she is coming home.  I tell her not for awhile, and that I don't know when exactly.  She is satisfied with that answer.  She is enjoying the new school (which is within the RTC), and is even liking the food.

I have been working this evening on painting my kitchen.  You might remember that when we left last week to drop Akila off in Wisconsin, that we had a painter here to paint.  Well the color I chose is horrid.  So I have the pleasure of redoing it.  It was not helpful to get home from that long emotional day to a kitchen that looked like crap.  But I'm taking care of that problem.

I think that for the next week or more, I will be living one moment to the next, trying to come to grip with Akila being gone.  Strange that as hard as I fought to have her placed, I am having a hard time with the placement.

Wednesday, April 4, 2012

Getting FASD coded properly

I came across this on a FASD Facebook page.  Please help this Dr. out if you can!!
My name is Alla Gordina and I am a general pediatrician in Central New Jersey, specializing in adoption and foster care.

By this e-mail I am requesting the help of families whose members are affected by FASDs.

In late 2011 many of you responded to my FASD survey, providing us with a lot of extremely important information that will be used in our new project "Fetal Alcohol Answers", which will be launched by the end of this month.

One of the major obstacles in providing care for persons affected by prenatal alcohol exposure is the absence of appropriate diagnostic codes in International Classification of Diseases (ICD). Such void seriously affects the possibility of a patient to receive appropriate diagnostic evaluations and thus - so much needed treatments and accommodations.

I have been in contact with the American Academy of Pediatrics about improving the coverage of FASDs in ICD. Today I received information that it will be possible to present the FASDs case to the Special Advisory Board that governs ICD coding in the United States.

While this isn't by any means a guarantee of success, we finally have the ear of the people who make these decisions, and I looking for help putting together a convincing case for the need for more codes describing all components of FASDs (FAS, pFAS, ARND, etc). Even more, in their correspondence the Board representative stated that if they will believe that issue is urgent enough, the change can be made even in ICD9.

That means that we can attempt to change the situation in 2012 (as implementation of ICD 10 in United States is scheduled for October 2013)
I am working with several FAS clinics, but I do strongly believe that parents do have an important say in this process too.
Please send me at your stories describing (a) the need for proper coding and (b) your assessment of the urgency of the situation.

If your child is followed by the FAS clinic, feel free to forward this e-mail to your clinic's team, so we will have input from as many groups across the country as possible.

Thank you in advance,

Alla Gordina, MD, FAAP

Clinical Assistant Professor of Pediatrics
Drexel University College of Medicine and
UMDNJ - Robert Wood Johnson Medical School

Global Pediatrics
International Adoptions Medical Support Services

7 Auer Court, East Brunswick, NJ 08816, USA
732-432-7777 (voice)
732-432-9030 (fax)