Longest day ever

Thursday was rough.  Very rough.  Friday also felt icky.  Tried to blog yesterday morning, but I couldn't stop crying, so I put it off.  I think I can do it now.

As I am writing, the 3 kids and I are at Breezy Point thanks to our friends Julie and Mark, who couldn't make it to the first 3 days of their week long time share.  The timing is perfect, and this gift is a true blessing.  Michael could not get Monday and Tuesday off so he stayed at home.  I think some time alone for him is healthy once in awhile.  We climbed the fire tower, and went swimming so far.  We are taking a dinner break right now.

We left after we got the painter set and Akila was in high spirits.  It is a 4 hour drive, and she was an angel.  She would out of the blue say "I love you mom.  I love you dad."  It was awesome, and sweet, but heartbreaking.  We arrived at the facility at about 2:30, our appt was at 3:00.  She wanted to go in so we did.  We had a tour (the guy asked her close to the end of it what she thought, and she said "Awesome!!", did some paperwork, and about 1 1/2 hours later, it was time for us to leave.

Michael said to the Admissions Director, "So we are done?"  He said yes.  Akila said to Michael, "It's OK dad, you can leave now.  I'll be OK."  I teared up, gave her a hug and a kiss, told her I loved her, choked up , waved to the Admissions guy, and left.  Michael teared up too as he said goodbye, and we left.  And we cried.  On and off the entire 4 hour drive home, and then some more.

It was horrific.  I honestly think it would have been easier for me if she were raging when we left, but I also know it would have not been better for Akila.  So I am thankful she was so good.  It was a long, horrific day. There is no other way to describe it.

The other 3 kids slept over at Dan and Tara's (Michael's brother and wife), so Friday morning was quiet.  Michael had decided to work from home, not knowing how emotional he still might be.  I woke up, tried to blog, but it was making me a mess.  I had to send an email to Akila's social worker/therapist at the RTC, cried all through writing it.  Michael and I went out for lunch.

Then at 4:30, I called Akila.  She had a super night and a great first day at the new school.  She loves her room, food was great, and school was awesome.  She is at summer camp, basically.  The social worker said the few kids who come in excited, usually lose that fairly soon, once they realize all the rules and things like that.

Akila always has a honeymoon phase when she goes somewhere new.  At the crisis home, it was about 2 weeks.  I think it will be longer here because it will take longer for her to get more comfortable.  It was good to talk to her.  Shortly after I talked to her, I picked up the other 3.  That helped me to start to come out of the fog of emotions I had been stewing in.

This morning, the kids and I got up, packed up, and headed for Breezy Point, a resort in northern MN.  It is just what we needed.  We will be here until Tuesday- it is spring break this coming week.  I so appreciate all of your prayers and support.  We definitely felt God's arms around us, and around Akila which is the most important thing to us right now.

Heading out soon

The Lord has been so gracious.  Akila is still sleeping and it is nearly 9:00.  We need to hit the road for sure by 10:00 so I will be waking her shortly.

We have a painter here today (it was a Groupon buy) and he is painting my kitchen.  I have been able to get him set up without having Akila getting super hyper and nutty about the painter being here.  She is really excited the kitchen is getting painted and wants me to send pictures- great idea!

It is a 4 hour drive, and I am not expecting any issues.  Akila is acting like she is going to camp.  I have been careful not to glorify this place, but she is excited about the adventure.  This is a true blessing, but it is also a sign of how damaged her brain is.   A typical child would be terrified.

Thanks for all of your support, will report as soon as I can how it goes.

Thanks for all the prayers

First off, thanks for the prayers, definitely felt surrounded tonight.  I figured telling Akila could go two different ways.  Kind of icky and bad, or she would be excited.  I was hoping for excited, and that is what we got.

Initially, she was a bit upset.  Her first question tore my heart out.  "Are they nice people there?"  Good question.  Then we started telling her about it, had her watch the video that is on their website, and started reading the student handbook to her.  She started to get really excited, it reminded me of when she went to the crisis home in September.

Michael and I were very calm and not emotional telling her, and she was very tuned in to our emotions.  She didn't want us to be sad, and I told her I am sad.  She said not to be sad, as she would have fun.  She got really excited about the fact that they earn a weekly allowance and have like a bank account the money is kept in.  Super excited.  She was also excited that she won't have to wear uniforms like she does to her current school.  And even more excited that they have a professional hair stylist who comes to the center to do their hair.  If only he or she did their nails too, she might have thrown a fit to go tomorrow instead of Thursday.

We talked about visits, phone calls, dress code and lots of the details.  It got her excited.  She then went running down to our family room to tell the other kids.  She told them in a bragging kind of way, and they handled it gracefully.  She was an angel the rest of the evening, and kept looking at our faces to see if we were emotional.  She felt very strongly that she does not want us to be sad or cry, and I told her that I can't stop being sad about this as I am going to miss her.

We are going to the Water Park of America after school tomorrow to have some fun family time before she leaves the next day.  My nephew works there and graciously got us free tickets.  The kids are all excited about this, as am I.

I will be up late tonight and tomorrow working non-stop to get everything ready.  We have painters coming (I bought a groupon a year ago that expires on Saturday) to paint our kitchen on Thursday morning at 8.  We are just going to leave them here to paint which I'm fine with.  But I have been peeling wall paper in this kitchen for over 7 years (no exaggeration), and it is pretty much done.  But I need to clean the walls up a bit and deal with some rough spots.  So not in the mood, but I guess I never really am!  I will look at it this way, I will get to come home from a long stressful day to a new kitchen.

Quick

Yesterday was rough.  Today has felt a little better.  But we could use prayers tonight after 7:00 pm when we tell Akila about the plans for Thursday.  Not sure how it is going to go.

Crazy mixed emotions

I got the call almost two hours ago that Wisconsin DHS has approved Akila's placement and she is scheduled to go to the Residential Treatment Center (RTC) on Thursday.  This phone call came just as the furnace repair man who was doing a tune-up on our furnace came upstairs.  I got off the call, talked to the furnace guy, called Michael at work and sat down at my computer to start pounding out emails.  And then I cried.

And I cried.  And I cried some more.  Eventually I went to Target so I would stop crying.  Now I am again as I am typing (one of the things I had to buy at Target was kleenex- go figure).  Maybe I can find another errand to run.

This news comes with a totally crazy mixed bag of emotions.

• Relief.  The past year has been horrific, and we are so in need of a change.  I know without a doubt that the other 3 kids need this badly.
• Profound grief.  I almost think I can say that I am more sad about this loss than the loss of my parents, which rocked my world.  I think that might be because this kind of grief has more ups and downs and twists and turns and will never end.  Not that the grief of losing a parent ever ends, but you do come to terms with it at some point.  Not sure if I ever will come to terms with this loss.
• Hope.  I believe in an awesome God and I know that He is using this pain, this loss, to exalt His name.  I know He is in this in every step, I just have to remind myself o this daily, hourly.
• Sadness.  As much as I am relieved, I am just so sad.
• Shock.  Even though I have been pushing for this for months, it still felt like a punch in the gut this morning.  Strange.  
• Excitement.  This is a hard one to admit, but I am excited for spring break, for summer.  This feels icky at the same time as good.
• Fear.  I know that an RTC placement is not what she needs.  I know she needs a group home placement.  I don't think it makes sense, and I don't look forward to the next few months and the mess that might occur.  I don't know how she will handle it.  But I know that she can't safely stay at our home any longer.  This scares the crap out of me.
• Tired.  I am so tired, even though I am getting decent sleep lately.  Just emotionally drained.  This morning for example, Akila was quite nasty.  She only hit me a few times (only), but she was just angry, and extremely mean.  She was mean to Hezekiah, who walked to the bus stop fighting back tears.
• Contentment.  As sad as I am, as grieving as I am, I know this is happening for a reason.  I know God has a plan.  I know He is wrapping his arms around all 6 of us and others who are impacted by this situation. I know that sadness and grief are a part of this awful purpose.  And I am content in His plan. He created our family in the most perfect way, and we live to glorify His name.  I am content in this decision, at the same time, dealing with the natural grief.
• Gratitude.  I have had so many of you praying for us, and other people in our life.  I am so grateful for all of you and others in our life.  Words cannot express my gratitude.

There are other mixed emotions, but these are a few of them.  I think I went through 10 kleenex's while writing, and need a few more.  I am now going to get ready for the refrigerator repair man to arrive, as our frig/freezer went out yesterday.  Going to try to get rid of the crying face before he gets here, men don't always do well with emotions, especially if they don't know you!

Saturday cleaning

I was at a training this morning at Children's Hospital for a Parent to Parent support program until noon.  As I mentioned earlier, Akila is gone at respite.  The rest of the crew did some cleaning, and were kind enough to document it for all of you.  Aren't they awesome?!!

P.S.  The kids don't normally make my bed.

Thankful

I got word late yesterday that Minnesota DHS has formally approved the placement and that it was sent to Wisconsin's DHS, with a note basically saying, please hurry.

One more hurdle.  I dropped Akila off at respite yesterday after school and have several things to be thankful for.  Respite is one.  So thankful for some peace this weekend for all of us.  The DHS approval is another.  Not sure what would have happened to my psyche if it had not been approved.  An awesome support system is another one.

I have several people who within a two day period, helped me to figure out a solution to our potential PCA hour shortage.  I have enough to get me through next week, but if she is still home at the end of the week, spring break starts, and that will be challenging.  But between respite hours and some creative help, I think we can make it work, Lord willing.

But, I am praying that the DHS approval from WI moves quickly, and that we can make the change by the end of next week.  I so want my other 3 kids to be able to relax over spring break, and to be able to have friends over, and to be able to sleep in, and to be able to go on bike rides with me, and to be able to breathe. They so deserve a week of fun, peace and quiet.  Please join me in praying that Wisconsin DHS moves quickly.

One more chance

Akila will be going to respite for the weekend, and all 5 of the rest of us are quite relieved.  I am going to pick Akila up from school today and drive her straight to respite.  Looking forward to a two night break.

Two nights ago when Akila was raging, I talked with her about the place she will be moving too soon.  She is still in denial.  She told me I was cruel for getting rid of her, and a bunch of icky stuff like that.  She thought she should have one more chance.  I told her she has been given a bazillion "one more chances", but she disagreed.  I told her I wasn't mad at her, that her brain could just not control her actions sometimes and that it isn't safe for her or the rest of us.

She carried on and on about one more chance.  I finally gave in and said OK, one more chance.  But if you hit, kick, push, bite, scratch or attempt to hurt any of us, that is your last chance.  45 minutes later, her last chance was over.  She pushed me really hard.  I gently reminded her of her chance, and how she had just shown me that she can't stop.  She stood there, bewildered looking, and said, "I didn't touch you".  And I think she truly thought that.  It is like she isn't even aware of her physical aggressiveness.

It is sad.  She will still want another chance, but I can't afford to give her more chances, as it is messing up the other 3 kids too much, not to mention the overwhelming stress that Michael and I are feeling.  It is just so sad.

Stupid system

Well, nothing is obviously going to happen this week so I have Akila scheduled to go to respite this weekend.  I am very relieved.  And we have a PCA for this afternoon, and I am relieved about that also.

I emailed our social worker last night to see if he could light a fire under DHS's feet to get them to move any faster on the approval of Akila's placement.  He emailed back and called this morning.  He did hear that there has been a verbal approval and we are waiting for a signature.   So stupid.  Makes me want to scream.  Who needs to sign it and where do they live?  Cuz I could get that signature pretty fast.  These people at these levels (not my social worker), seem to have no idea what their dinging around does to an entire family unit.  I am trying to get on some DHS committees, we will see if that happens.

What I had forgotten about, is that when DHS does finally sign off, then it has to go to Wisconsin's DHS for approval, so we are looking at another week at least.  Sigh.  I got the great advise of calling the police again.  That is such a waste of time and tax dollar resources.

I am not sure how long the PCA will be able to keep Akila out tonight, but I plan on leaving with the kids to go to the health club when they are on their way home.  I do not want a repeat of the last several nights, especially last night.

Utterly tragic

Michael hasn't had to work late much lately at all, but he did a little bit tonight.  We had no PCA tonight because of funding issues (you get PCA hours in 6 month chunks, and have to use them up within the 6 months.  You can bank them and use more one week and less the next week, but within the 6 month period.  Our new 6 month period started Mar. 1st, so I am trying to not go over the allotted daily hours in case Akila is gone next week, or I am going to have to pay the state).

Akila and I went for a bike ride when she got home from school, which was nice. Then I drew with her.  Then she wanted to go to her room to play alone.  I started dinner.  She came down and wanted Imani to play with her, and Imani said "not yet".  This set Akila off.  She came into the kitchen and started to lose it.

I tried to distract her, get her to help me- but nothing worked.  She got violent.  She tried to take a pot of boiling water and throw it on me, but I was one second ahead of her, thank God!  She hit, kicked and scratched me multiple times before I told her she was going to need to be restrained.  As I was moving her into the living room, Zeke came up from the family room crying as they could all hear Akila's rage.

I was backing out of the room pulling Akila with me as I had her by the wrists, when Zeke attacked her from the back.  He totally lost it.  Zeke is a happy go lucky super duper fun kid.  He is at the end of his rope.  We all pretty much are.  Imani had come up, and she helped get Zeke off of Akila and I got her into a restraint.  I had Hezekiah come and take Zeke to Ms. Kathy's, our next door adopted grandma.  Imani took over the cooking.

I had to restrain her for awhile.  It is the goofiest thing you have ever seen.  The front screen door is open so all who walk by can her her cussing and carrying on.  I don't care.  Imani had a question about the meal I had been cooking.  I had her bring the cookbook for me to see.  I am sitting on Akila restraining her, reading a cookbook and telling Imani what to do next like it is as normal as anything.

When restraint was over, she started going in on Imani verbally, so I sent Imani to Kathy's also and finished dinner.  She eventually settled down.  After dinner, Imani and Zeke played with her for quite awhile.  Aren't they amazing?  But they shouldn't have to do this anymore.  None of us should.

After Michael got home, eventually she went nuts again.  Another restraint.  More fun.  Not.  More emotions from Zeke.  He doesn't want to leave me alone when Akila is out of control.  Yet, I don't want him to see and hear it all.

I just feel so sad for Akila.  She wants so badly to behave, but just isn't capable.  She had her annual physical last week.  Our Pediatrician is awesome.  She was sad.  She just kept saying, it is so "tragic", as it is not her fault.  So true.  It is tragic.  Utterly tragic.

Waiting, not my thing

I called our social worker yesterday.  I am so not patient.  I don't think I should be patient either, it has been a long time coming.  Zeke has had 4 days in a row of being scared and crying when Akila loses it.  I am not OK with this.

The kids are ready for a change- as are Michael and I.  Next week is the last week before spring break.  The placement better go through by then, or I might have to go cujo on some people.  We cannot do spring break with Akila home, even with PCA support.  It will put us over the edge.

I am praying for word today on approval for the placement, and hoping that it can happen end of this week, or next week.  Please pray with me.

Fast acting fever

I was giving a family testimony at Children's Hospital this morning for the New Employee Orientation which I get to do every couple of months.  After I finished, I had a couple of voicemails from the school nurse.  Akila had a 101.6 temp.  It felt like a punch in the gut.  Akila was horrible this morning, like many mornings.  She wasn't violent, but extremely rude.  I was so relieved when she got on the bus.

I finished speaking at 11:30 and was suppose to be at a noon meeting which I had to miss.  Even knowing that Akila is usually pleasant when she is sick, still didn't give me comfort.  That is just where I am lately with her.  I picked her up, she was very pleasant.  Got home, took her temp, no fever at all.

She watched TV for all of 15 minutes, and then started on a rampage.  I tried to get her to scrapbook or do something with me, but she was obsessed with me getting her something new, either from our basement (which I swear she thinks has buried treasures), or from the store.  I said not today.  She didn't like that very well.  The girl was obviously not sick!!!

At one point, she was looking for a plastic cow toy.  We have never had one, but she had it in her head that she needed one.  She wanted me to look in the basement.  I told her I didn't have one.  She flipped.  Just go look you @#@!.  So I looked.  Amazingly, there was no cow in the basement.  She did not like this.  I tried to get her to use a substitute.  We have a tiger, several dinosaurs and some other plastic/rubber animals which would have worked for what she had in her head.  But no go.

It was a long afternoon.  There was no fever.  I had cancelled our PCA when I was picking her up from school- usually she takes Akila to dance which is from 4:30-6:30.  Close to 4:00, I realized that Akila could easily go to dance and I actually talked her into it.  I did need to get some stuff done at the studio so it worked out well.  It was nice to have a 2 hour break after a long afternoon.

We got home, and about 30 minutes later, the thunder/lightening/rain started.  She went nuts.  Not being scared, just being hyperactive and nutty.  She flew around the house like a tornado, convinced we were going to have a tornado.  Going from TV to TV checking the weather.  It was great fun.

So, I am sending her to school tomorrow.  Unless she wakes up with a fever.  In which case I think I might have to research one of those daycares for sick kids and go quickly enroll her.  Might be the first time they get a 7th grader enrolled.  Or maybe I'll just drop her off at my sister-in-law's house.  They're on spring break.  ;)

Weekend update

This weekend, both days, Zeke burst out crying while Akila was hitting, kicking, biting and stomping on my feet. She then gets kind of uncomfortable, and starts to call him a cry baby.  We really need things to change.  Now.  I know our social worker was on the phone with DHS (Dept. of Human Services) on Friday, so hopefully we are getting closer (having to wait for an interstate compact agreement as it looks like Akila is going to Wisc.).

We had an awesome fun day.  We went to visit my friend Julie after church and her awesome family.  You have to check out her blog if you haven't, it is the best.  If I were smart like Julie, I would have taken pictures, but I never, I mean never, think of taking the camera with.  They have a super fun house with a great backyard, so the kids had a blast.  And Julie is a great photographer and took family photos and individuals of each kid- they are gorgeous.  I will post them when I get them.

On the way there and home, Akila hit Imani while we were driving.  Imani hit her back and stood up for herself.  I'm totally fine with that, not sure if I should be, but I am.  Akila started to perseverate about the basement and thinking I had some new clothes or treasure for her down there.  It was at this point where I told her how sad it is that she keeps thinking I have something down there, and that she won't let go of this obsession.  As it always leads to a rage.  I then talked to her about Wisconsin again, and about the fact that she is going to be leaving, and that it will be within a few weeks.  

This kind of stops her a little bit, it angers her, but I was trying to tell her that I don't want this to take her by surprise so I am bringing it up again.  She honestly does not think it is going to happen.  When the time finally comes, getting her there is going to be rough.

Imani is outstanding!

Imani is in 6th grade and in her 3rd year of playing clarinet.  At her school, they have a Solo and Ensemble Festival where they have 6th graders perform a solo in front of a judge and get feedback.  They get rated as fair, good, excellent or outstanding.  Imani got an outstanding, and it was fun to watch.  She and Michael put this video together as they are trying to learn how to use video editing stuff.  Check it out!  So proud.

Getting stuck

It is so interesting to look at what Akila gets stuck on, what she perseverates on.  As I mentioned in yesterday's post, she has been stuck on a necklace for two days.  She will not be done with the necklace.

I think she will also be stuck on this scrapbooking junk (no offense to you scrapbookers out there, love what you do, just hate doing it myself) for awhile.  She also gets stuck on medical things, like last year when her endocrinologist mentioned that there might be a slight curvature in her spine and that our Pediatrician should check her for Scoliosis which is something girls with Turner Syndrome are at a high risk for having.  Well, I had to hear about that for months.

But the key, I have figured out, to what she gets stuck on, is if it is something she wants or likes.  This makes sense when you think about it.  When I have a trip pending (which is rare!), I think about it all the time as I am excited about it.  But I also have the filter to not talk about it non-stop and drive those around me nuts (I think at least).  I also have the impulse control to not smack people if I don't get to go on a trip or get what I want.  She does not, most of the time.

I have told her more than once in the past several weeks that she will soon be going to a different place to live, the balls are rolling and it should be happening soon.  We have talked about it, but 10 minutes later, it is out of her mind and she doesn't even seem to remember that it is going to happen.  The next time I bring it up, it is like she never knew, or didn't think it was true.

Now, this is something I would perseverate on, most neuro typical people would.  Being told at age 12, that you are going to have to go live in a group home or residential treatment center, would be enough to put most 12 year olds into a panic, effect their sleep, mood, and daily life.

This is just more proof of how damaged her brain is.  It is like when we were bringing her to the crisis home in September.  She was initially mad, but then asked if she would ride a different bus to school and we said yes, and then she was excited.  When we brought her into the crisis home, it was kind of like she was at camp, and she said goodbye with no drama.

Now, that doesn't mean she wasn't calling us begging to come home within a week, but that is because it was even harder to get her way.  Cupboards are locked, there is less freedom, etc.  It wasn't necessarily that she missed us.  When she would talk longingly about coming home, she would say things like I miss my room.  Not that she missed us.  I know she did, but she could not verbalize this like a neuro typical child would.

I believe strongly that the brain damage from prenatal alcohol exposure effects attachment, as does the feelings of loss that a child who was adopted has.  We got all of our children between 5-10 weeks of age.  Akila was the youngest, at 5 weeks old.  Our other 3 children are very attached to us and healthy.  But having the trauma in the womb of brain damage, has made attachment hard for Akila.  She is attached, yet not.  Hard to explain.

So, pray for us this weekend.  It will be a long one.  I am going to go to the thrift store and see if I can find a scrap book for cheap, and maybe we can work on it this weekend (eewww, makes my skin crawl thinking of doing something so crafty ;-), but I do know that it would be a nice thing for her to have to bring with her.

Magician tricks are running thin

I don't have many tricks left to pull out of my hat.  Last night, Akila was with one of our awesome new PCA's.  Like a doorknob, I neglected to tell this PCA not to take her to a store.  This PCA is a track runner for the University of Minnesota and brought Akila to the track at the U yesterday to run.  Cool!

They also stopped at a store on campus.  Not cool.  Not her fault, my fault.  PCA texted me that there was a necklace for $10 that Akila wanted.  I texted back that we did not want to start that precedent.  Cool, she said. Minute later, the phone rang, it was the PCA's phone.  I knew this would be Akila calling to plead with me for the necklace.  I did not answer.  Close to an hour later, PCA texted me that Akila was going to call me again.  I texted that I would not answer, as she would just escalate as I told her no about the necklace.  She said that sounded like a good plan.

When they did get home, Akila started in pretty quickly about the necklace and she was mad.  PCA and I both tried to distract her by talking about all the fun stuff they had did.  As PCA was filling out timesheet, Akila put her fist up to punch me, but looked at PCA (who I am pretty sure did not see what Akila was doing), and decided not to hit me, but to just keep being snotty.  This PCA is newer, and due to her track schedule, is not available every week so she is still in the honeymoon phase.  Thank goodness.

After she left, Imani quickly jumped in to ask Akila to do the end of the night doll play that she has been totally awesome about doing the past 6 weeks or so.  It worked, necklace was forgotten about.  For yesterday at least.

Same PCA picked her up today to take her to her families home in Minnetonka.  On the way, Akila was going on about the necklace.  Once they got to Minnetonka, she forgot about it.  Until they were driving home.  Then when they got home, Akila was showing me some scrapbooking pages she had done at the PCA's house.  They were super cute.  Then she asked for a scrapbook to put them in.  I don't have any.

I am horrible at crafty things.  I have some photo albums, where you stick the pictures in a plastic sleeve kind of thing.  She was not pleased with this.  PCA and I both tried to tell her that she didn't need to do it all tonight, and stuff like that.  But she was mad.  She held it in until PCA left, cuz PCA is still in the honeymoon phase.  Let me make this clear, the PCA is awesome, this has nothing to do with her.  All of my PCA's rock. This is just our life.

After she left, Akila perseverated on a scrapbook.  She wanted me to look everywhere in the house as she was sure I had one.  I have 3 ring binders, but that is not what she had in mind.  I got her a cute 3 ring binder, but it did not work.  She was not satisfied.  And she was not nice.

Then she wanted to know if I had the car seat we got her in.  She was looking at the photo album with pictures of the day we met her and took her home.  I said no.  She was not happy.  She was not nice.  She wanted me to find something from when she was a baby.  I told her if she took her meds I would go and look in the basement.  I have a big plastic bin of her mementos from over the years and knew I could find something.

I found her baby book, which she has never seen.  I knew this would be a big hit and would pacify her.  But I came up and told her I had something really special, and that she needed to get her jammies on, brush her teeth and put her head scarf on (which causes issues every night).  She eagerly did this.  I brought up the baby book, the trick up my sleeve, and she was delighted.

Akila's world is all about Akila, more so than any child I have ever known, so this was the perfect "trick".  She was in heaven.

Problem is, I am running out of tricks.

Exposure

There are four main factors that play into whether a fetus is impacted by alcohol that their mother drinks.  They are:

• Mother's metabolism and diet
• Fetus's resiliency
• Timing of exposure
• Amount of alcohol

There is no safe level of alcohol consumption during pregnancy.  As many have said before, drinking while pregnant is like playing Russian roulette with your child.  It is a huge risk to take.  It truly breaks my heart that women are still drinking while pregnant while their doctors are advising that a glass of wine a day or an occasional drink is OK.  It is not.  It is not OK to take that risk with your child.  

It also breaks my heart for women who have an addiction to alcohol and are pregnant.  If you have a true addiction, merely being pregnant is more than likely not enough to get you to stop drinking.  And then there are the women that are partying hard before they know they are pregnant.  What an "oh crap" moment that has to be.  I am not being judgemental when I write this, just stating the facts.  

It seems that there are three main type of situations where a child is prenatally exposed to alcohol.

1. The woman who is an alcoholic
2. The woman who thinks (sometimes with medical advise), that occasional and light drinking is OK
3. The woman who drinks before they know they are pregnant

I'm sure there are other situations, but these seem to me to be the main three.  We do know that heavy consumption will more than likely have a greater effect on the fetus, causing more brain damage.  But we also know, that there are cases of women who did some fairly heavy drinking and their babies turned out OK.  It is just such a risk.  Have I said that yet?  It is a risk.

I have four adopted children.  All four of them were prenatally exposed to alcohol.  I did not really realize this until this past summer.  I obviously have known for awhile that Akila has FASD.  Before we figured that out when she was 6, I did not know much about FASD.  I only knew of Fetal Alcohol Syndrome, and thought that you had to have facial features and a low IQ to have FAS.  I was wrong.  Very wrong.  Many people still think this.

This past summer, Zeke was having some rheumotological issues.  I needed to dig up his paperwork from birth.  Of course, I know Akila's like the back of my hand, but the other 3 kids, I remember bits and pieces, but not all the details.  Part of this is that Akila was our first child.  We had more time and energy to remember facts, and all that stuff.  

I had a very difficult time finding Zeke's paperwork.  We had moved into a new house (the one we are currently in), and he was a sick preemie and this is around the time when Akila started to be somewhat challenging.  Life was crazy.  Paperwork got shoved places it shouldn't.  I was able to find Imani and Hezekiah's paperwork though.  I read through it.  My mouth was hitting the floor as I saw that both of their birth moms had admitted to using alcohol during pregnancy.  Finally at the end of the summer, I found Zeke's paperwork, and saw that he had been exposed to alcohol also.

These facts had been disclosed to us, but it didn't matter.  They were our children, all four of them.  We knew it in our hearts instantly, before we even met them.  I am so glad that God had us say yes to each one of them.  He had a plan.  He has a plan.

This should not have been too shocking to me, as the rates of FASD are pretty high in the adoption world.  I think I was partly shocked by the fact that I didn't remember.  But it shouldn't shock me, FASD was not really on my radar back then.  I thought that there would need to be an admittance of heavy drinking and risky behaviors to have it be an issue.

Now that I know a lot more about FASD, I am amazed at God's hand in our family.  My kids are awesome kids, all four of them.  They are all doing the best they can, and I am proud of them.  We had conferences this week, and they are all doing great.  Hezekiah is in 4th grade and reading at a 9th grade level.  Imani has all A's and one B.  Zeke is rocking in 3rd grade.  Akila has been doing well academically, even considering her learning disabilities.  She has been engaged at school, and genuinely wants to learn, and seems to really enjoy it.

We have 3 kids who are really well behaved, and 1 who is trying her best to behave within her limitations.  Yes, we are struggling, and I mean really struggling.  Things on the home front are as out of control as ever, and as I have been writing, we are needing to change the living situation.  But... our kids are amazing.  God's hand in protecting them all is glorious.

I have mentioned before how Akila had to fight to live.  She also has Turner Syndrome and 98% of all fetuses with Turner Syndrome spontaneously abort.  Not only did she have that odd against her, but she was bathing in alcohol in her birth mom's womb.  Some may ask where God was while she was struggling in the womb.  He was there.  He gave her the strength to survive, and He gave her birth mom the wisdom to give her up.  And |He destined her to be ours.  For that, I am thankful.

I don't want people to think it is OK to drink while prego, since I have 3 kids who were exposed and seem unharmed by the exposure.  We will never know what potential was taken away.  Maybe Hezekiah would be reading at a 12th grade level without the exposure.  Maybe Imani would have straight A's, or need to be taking high school math.  Maybe Zeke wouldn't perseverate on candy all day every day.  :)  Exposure is a dangerous thing, and one I would discourage anyone from doing to their child.

Preparations

Most of us do better when we know what to expect, when we are prepared for something.  Our awesome team of PCA's work really hard to take Akila into the community, especially after they have seen her in action at home- it is not pretty.  I ask that they text me before they leave dance, or the library, or where ever they are, so I know when to expect them.  I like to be prepared for battle.

I know that you may think that I have plenty of time to prepare for Akila's return home.  I do have time, but I really need to mentally prepare, basically, to prepare for battle.  When I receive that text, I try to go around the house, make sure that none of the kids have left a scissors laying around after an art project (which they do way too often!), make sure there is nothing in the upstairs hallway that she can grab easily and throw down the stairs at someone when she is mad, and hide stuff that she should not see (like kids art projects they just brought home from school, mail, certain foods, bags of stuff from a recent store trip, newspaper ads, etc.).  I also go around the house and let the other kids and Michael know what Akila's ETA is.

We live in a war zone, and we never know when the explosions are going to hit us, so we try to be prepared. I also try to make sure that I have my cell phone in my pocket, just in case I need it.  It helps to reduce all of our anxiety when we are prepared.  Most of the time, it helps me to be more patient when she does come home in a funk.  Not always.  Sometimes, no matter how prepared I am, I have no patience after the first piece of junk comes flying from her mouth.  As I am typing this, a PCA texted me that they are on their way home from dance.  I was going to close up quickly, but then received a second text saying they decided to stop at the library.  But I think I am going to start preparing now.

Siblings

I have a few projects up my sleeve I am working on right now.  One is the sleep article I mentioned in the previous post.  Another one is how to support siblings of children with FASD.  My kids went to a Sib Shop at Children's Hospital and Clinics a year ago, and they really loved it, but it was not the best fit.

I think it would be great if they could go to one that was exclusively for siblings of children with FASD.  For them to sit and talk about Akila's rages, while another sibling of a child is talking about their sibling's cancer and hospital stays, is hard.  The issues are not really in the same ballpark, if you know what I mean.  So I am hoping to get some Sib Shops for families with FASD ( I am working on this, stay tuned).

We do several intentional things to try to support our 3 kids who do not have FASD, here are a few of them.

• We do things like have date nights with individual kids to try to give them attention.  
• Michael rotates through on Saturday mornings with taking a different kid to breakfast.  
• We try to have PCA's take Akila into the community and give us all a break and a breather.
• We talk very openly about Akila's disability and create an atmosphere where the kids can talk (or at least we try really hard to).
• We have Akila go to respite once in awhile so the kids can have a friend over for a sleep over or playdate (probably not often enough, but it is hard to find respite).
• ??

These are the things that I can think of right now, but again, I need your help.  Please comment and give me ideas of how you support your children who are not prenatally exposed to alcohol (if you have any), or if you have heard of something other families are doing in this area, or if you have ideas you want to do but have not been able to try yet.  I know many families who have children who do not have FASD, who have been diagnosed with PTSD (Post Traumatic Stress Disorder), from living with their siblings.  

It is easy to get sucked into the vacuum of FASD, and to spend the majority of our time and energy on helping our children who have FASD.  We have to remember to look at the entire family unit, and how our exposed kids, and our own stress, are effecting the other children (and other family members, such as spouses, but that is another post).  Would love feedback people, and thanks in advance for your time!

Sleep and FASD, are not friends

Most children and adults with FASD have sleep disorders also.  There has not been a lot of research done in this area, but one study found that 82 out of 100 caregivers reported that their children with FASD have sleep issues.  The issues can range from night terrors, waking up in the middle of the night, sleep onset delay (having a hard time falling alseep), and sleep walking.

Akila has issues with falling asleep, and staying asleep.  She takes Melatonin and Trazodone to aid in her sleep.  I am writing an article with my friend Jerrod Brown on FASD and sleep issues.  At the end of the article, we are listing strategies for assisting in dealing with the sleep disorders that our children, therefore our families face.  I am going to list some of the strategies that have been brainstormed already, but would love any ideas or suggestions any of you may have that are not on the list.  This list has some things that families may find helpful, certainly they would not all work for everyone, but it would be a pick and choose kind of list:

• Medications including Melatonin, Trazodone and others.
• Staggering bedtime for different children in your family
• Consistent bedtime ritual
• Going to a sleep disorder clinic for a sleep study
• Weighted blankets
• White noise, fans
• No screen time one hour before bedtime
• Comfort item
• Night light in room
• Reduce clutter and stimulation in bedroom if possible
• Bath before bedtime
• Deep breathing or yoga late in the evening
• Keeping same bedtime and same wake time
• ??

Also wondering if anyone has found anything that helps with teenagers who have FASD and sleep issues.  It can sometimes be hard to get them to take sleep meds.  I fully realize that most teenagers stay up late, and that this is often the norm, and that sleep is vital to the teenage body and brain development.  But I also know of some families who are really struggling right now with their teenagers not sleeping at night.

So please feel free to comment away or email me with any ideas or things you think we should include in the article.

On a side note, I will be sleeping in tomorrow as Akila is in respite this weekend.  I don't mean to rub it in or anything for all you who might not get to sleep in, but I am really looking forward to it!  Sweet dreams.

Concrete thinking and being challenged with generalizing

I blogged here about how Akila has a hard time generalizing.  Well I just happen to have a few more examples of it, shocking, I know.  Kids with FASD are known to be very concrete thinkers, you have to be careful with word choices.

Akila has not wanted to go on community outings with PCA's lately.  This is a huge bummer, as it is the only break we get.  Having a PCA work in the house with Akila when we are home, is very challenging.  No matter how good they are, and no matter how hard they try, Akila still picks fights with all 5 of us.  It is not fun.  So we have always survived with having PCA's take her places.  But lately, she does not want to go.  I am thinking it is possibly related to the fact that she will be moving out in the near future.

Anyway, I was telling the PCA tonight to not give Akila a choice of where to go.  I was telling the PCA's the same thing at the end of last summer.  She will just not choose an activity, or choose to not go somewhere if given the choice.  So I said, just plan something and bring her there after you pick her up from school.  If she asks where you are going, tell her you are bringing her somewhere that is a surprise.  I had to make sure she knew not to say, "I have a surprise for you", as Akila would then think that she was going to give her something.  Concrete thinker that she is.

I had told her that I would straighten her hair tonight.  As you may recall from many older posts, we have always had issues around hair.  Therefore, a little bit of vomit comes up in the back of my throat every time I think about having to do her hair.  Just being honest people.

The respite provider who she has stayed with the past few times, is a professional hair stylist, and has done Akila's hair.  Akila has also been going to a salon for her relaxers in the past year or so.  I did get some new hair oils and greases today to style it with.  She was excited about this.  So as I started on her hair, she immediately was getting mad at me if her hair was pulling in the slightest.  After her shower, she had combed through it.  But she was yelling at me for every little move I made.  And then she hit me.  I warned her, and she hit me again.

I walked out of the room.  She followed.  She yelled.  PCA tried to distract and encourage.  She pretty much ignored PCA.  Eventually, she apologized and I said I would try again, but if she hit I would stop again.  She of course hit.  I walked away.  She followed.  She was hitting and escalating.  It was not pretty.  For awhile.

Eventually, quite a bit later, we were back to the hair.  But I don't have the right brush, according to Akila.  It doesn't look exactly like the respite providers.  And I didn't comb it exactly like the hair salon lady does it.  And I didn't dry it exactly like my niece did last time.  And darn it, the girl can read.  Many times I think it would be easier if she couldn't.  She reads the bottles of goop, and thinks I have to follow each step to a T.  And I need a new flat iron as the one I have is not like somebody used on her.

I can't get her to understand that the hair goop is all basically the same.  Yes, I have met a zillion different Black women over the years who have recommended this or that hair goop.  They pretty much all seem the same to me, there have been some that are better than others, but all in all, nothing really stands out.  So it doesn't matter which one I have.  Especially because she won't even apply it everyday to keep her hair and scalp healthy.  That's another story.

I am so thankful that Imani has dread locks, and that she rocks them!!!

Conference on Child Maltreatment, Welfare & Dependency

My friend Jerrod Brown and his organization the American Institute for the Advancement of Forensic Studies is planning another event that I highly recommend.  Judge Tony Wartnik who is an expert on FASD will be presenting at the conference and he is really cool!  I will also be on a panel as well- what else could you ask for?? :)  I have cut and pasted the info here as I can't figure out how to get the flyer on my blog.  Email me if you would like me to send you the flyer and registration form.

Here are the details:

FIRST ANNUAL CONFERENCE ON CHILD MALTREATMENT, WELFARE AND DEPENDENCY:

ABANDONMENT, NEGLECT AND ABUSE INCLUDING SCALDED AND SHAKEN BABY, AND OTHER FORMS OF CHILD ABUSE

Seminar Date: April 25, 2012 8:30am-4:30pm

 6.5 hours of continuing education credits

Presenter: Judge Tony Wartnik (Author, Educator, FASD Expert)

The 1st Annual Conference on Child Maltreatment, Welfare and Dependency, to be presented April 25, 2012 will provide an overview of the federal and state laws that govern the work of child protective services, the courts, and alternatives to dependency proceedings such as Child in Need of Services (CHINS), At Risk Youth (ARY), Truancy (BECCA in the State of Washington), Guardianships and Open Adoptions.  This conference will also focus on Minnesota specific laws related to the child welfare system.   It will also identify and analyze the burning issues we are faced with today, including FASD and other areas involving children and parents with special needs.  We will use case studies in order to gain insight as to the type of issues that arise in child welfare cases and the chronology of case processing and decision making deadlines.  In addition, the relationship between Child Welfare and Family Law will be discussed along with best practices, such as the use of Unified Family Law Courts, for dealing effectively with issues involving children caught up in child welfare non-offender cases, delinquency cases and family law litigation or a combination of these court proceedings.  In addition, audience members will learn more about the various forms of child maltreatment and the risk factors associated with them.    

Professional Panel Discussion: During the later portion of the conference, there will be a professional panel discussion involving members from various professions that relate to the Child Welfare System.  These professionals will be discussing their experience working within this system and answering questions from the audience.

Training Objectives:

1) Learn about the roots of the government’s role in child welfare and the fundamental principles that guide our child welfare policy.
2) Acquire an understanding of the child welfare/dependency court system, the goal of reunification, the role of the various players in a dependency proceeding, and the relationship between the dependency system and family law.
3) Identify the conditions precedent to a determination that a child is dependent (e.g.), abandoned, neglected or maltreated and understand the relationship between FASD and related conditions, in light of recent changes in the CAPTA law.
4) Examine the time line for processing dependency cases and the role of the federal government in the enforcement of the time lines.
5) Learn about role of substance abuse, lack of anger management, mental illness, FASD, and other disorders in child dependency cases.
6) Acquire knowledge about scalded babies, shaken baby syndrome and other forms of child abuse and how FASD relates to these behaviors.
7) Know the types of services that parents and children can be ordered to participate in that are aimed at identifying the conditions leading to the dependency action.
8) Understand the primary goal of effectuating reunification of the family unit.
9) Become knowledgeable about termination of parental rights, the burdens of proof for dependency and termination rulings.


Location: Holiday Inn St. Paul East 2201 Burns Avenue St. Paul, MN 55119 651-731-2220
Cost: $50.00 (Individual Rate)
Registration Form (form on back)
Additional Info: Jerrod Brown Cell: 651-734-5517 Email: Jerrod01Brown@Hotmail.com


Presenter’s Biography:
Anthony P. (Tony) Wartnik served as a trial judge for 34 years, almost 25 years on the Superior Court in Seattle, retiring in 2005 as the senior judge. He served as Dean Emeritus of the Washington Judicial College, chaired the Judicial College Board of Trustees, and the Washington Supreme Court’s Education Committee. Judge Wartnik chaired a task force to establish protocols for determining competency of youth with organic brain damage and the Governor’s Advisory Panel on FAS/FAE. In addition, he chaired the Family and Juvenile Court Committees and the Family Law Department of the King County Superior Court, as well as the Sealed Adoption Files Committee. In the latter capacity, Judge Wartnik was responsible for creating the current protocols and policy for the determination of when sealed adoption files can be opened and the appointment of confidential intermediaries (“C.I.s”).

Judge Wartnik is the Legal Director for FASD Experts, the first multidisciplinary forensic FASD diagnostic team in the United States, and a consultant to the Fetal Alcohol and Drug Unit (FADU) at the University of Washington, School of Medicine. He received both his B.A. and J.D. degrees from the University of Washington and its School of Law, has attended National Judicial College courses on managing complex mental health cases and managing death penalty cases, participated in SAMSHA’s Training the Trainers Program, and provides annual FASD scientific research updates. Tony is an internationally known speaker and author on the topic of FASD and the courts.

Wishing for consistency

I so wish Akila was more consistent in her goofiness.  I can do goofy.  I just can't do violent.  When I say goofy, I am talking about her non-violent anger.  Her verbal aggression.

We are trying really hard to avoid rages and violence at this point.  We always do, but even more so now as we wait.  And wait.  There is some movement behind the scenes, but it is at a crawl pace.  In case you hadn't noticed.  

The last week or so, she has not been extremely violent, a punch here and there, a kick here and there.  But she has been consistently verbally aggressive.  Sometimes, she just seems downright mean, nasty, angry.  And just when I think I have some little qwerky thing figured out, I learn I don't.  Here are a few examples:

• One morning as she was going out the door to the school bus, I was at the door like June Cleaver handing her backpack to her.  I got some foul words thrown at me.  "Don't touch my backpack you stupid %#@#@!!!!"  The next morning, I did not touch her backpack and got some foul words thrown at me, "Give me my backpack you dumb%@#@!!"
• One morning, when she came down after getting dressed, I asked her if she would like oatmeal or eggs for breakfast.  I got some foul words thrown at me, "Leave me alone you !@!#!!  Gosh, why can't you ever leave me alone.  You're so stupid, etc."  Next morning, I did not ask about breakfast or say anything.  I got some foul words thrown at me.  "I'm hungry you idiot!!!  Get me some breakfast, what are you waiting for?!?!!"
• One evening, when tying up her hair in a scarf, I asked if she wanted to take off her headband, or if I should.  I got some foul words thrown at me.  "Don't touch it you stupid idiot!!!  Gosh, you're so stupid.  Keep your greasy hands off of me, etc."  So, I asked if she wanted to keep it on or take it off.  "OFF you fool!!!" She yelled.  So I waited for her to take it off and she didn't.  Then she yelled at me again and ordered me to take it off, even though she had just told me not to touch her.  The next night I asked if she wanted me to take it off and she said, "Da dar da dar!! You dummy."  So I took it off.  The following night, I started to take the headband off, and got smacked.
• One day she will mac and cheese for an evening meal and love it.  The next time I will offer it as a suggestion and she will yell at me that she doesn't like it.

I just wish she would be consistent in her goofiness.  I feel like my brain is always in high gear as I try to stay one step ahead of her, and it still doesn't even work.  She is just in a mode, a long term mode, where she just needs to be mad about something.  She will sit and yell at something that is the way she wants it.  It is emotionally exhausting.

A different date night

We took Akila out on a date night on Saturday.  This is something we do with each kid, it ends up being about every 7-8 months between each of their date nights, so 1 1/2 a year per kid, about.  On a date night, the special kid picks a restaurant, an activity and gets to spend $25 on a toy or something else.

Date nights with all of the kids are something that Michael and I cherish.  They are all on their best behavior as they are the center of attention.  Akila has always been fun on date nights, although sometimes when we have returned home, within 30 minutes she has gotten kind of yucky, but on the date she is always good.  Knowing that Lord willing, she will be moving to a more safe environment sometime soon, we thought it would be nice to have a night we could enjoy with her and it is her turn.

Akila chose Bubba Gump Shrimp as she is a seafood addict.  She absolutely loves crab legs and ate an entire adult size entree of crab legs.  Bubba Gumps is located at the Mall of America and she also chose Nickelodeon Universe as her activity.

We rarely take Akila to a store let alone a mall.  She is too overwhelmed by the choices and it never ends well.  While in Nick Universe, she saw the American Girl store, a store which I have been able to avoid with her for years.  I was not able to avoid it any longer.  Crap.

In the store, she was mesmerized.  She wanted a doll, badly.  She has two American Girl dolls, both which I got at garage sales, but they were in great shape.  They are no longer in great shape.  One of them was even in the car.  So I told her we could go and get the doll and have them style her hair.  I thought for sure she would go for that.  But no, she was stuck on buying a doll.  I told her that she did not have enough money for that, as the dolls are $108 or so.  The prices are of course not marked well so that was a pain.  She kept going to a different doll thinking it would be a different price.  I tried to be patient, I really was quite patient.

It was similar to what I realized in the past few months has been a road block to her in regards to cell phones.  I thought I had blogged about this, but I can't find it so I might be repeating  myself.  As many of you know, Akila has been obsessed with cell phones forever.  FOREVER.  She has stolen many of them.  She wants one badly, and it isn't going to happen.  She will look them up on the Internet and we will explain over and over to her, that they are not free like it says.  That you have to sign a 2 year contract at $40 or $50/month, which equals.....  She doesn't get it, or does she?  Part of the problem, I finally realized, is that when she is looking at a particular phone in the Best Buy ad, and I explain that to her, she then looks at the next phone and thinks she can get it.  Even if I say, ALL cell phones work that way, she is not able to transfer that concept to the next phone.

She did this in January with my brother.  He was patiently explaining to her how much a phone would cost over two years, and all the things we have told her a million times.  I was in the next room trying not to laugh.  He came into the living room proud of himself for having explained to her.  Then she called him back in, and showed him a different phone.  He explained it works the same for that phone, and all the phones.  She then clicked on a different phone and asked about it.  His patient voice was starting to waiver as I laughed silently in the next room.

Well, the same thing happened at the American Girl store.  They have tons of dolls in display cases showing different outfits and accessories.  They don't have prices by the dolls, just the clothes.  She was convinced these dolls were cheaper, and would not listen to me telling her they were not.  I showed her some great clothes and accessories she could get, but she was stuck on the doll.

Then she wanted me to go to a staff person and ask if they would give us a deal.  I told her that stores like this don't negotiate the prices or do that, and she yelled at me.  She had one of the PCA's go up to the Target staff and ask if there was any way Akila could buy some baby food for one of her pregnant teachers with just the $1 she had to spend.  They of course said no.

I told her I wouldn't ask the staff, but that she could.  She did ask a staff, and of course they said they don't do that.  After some very icky moments in the store, she decided we should go look somewhere else, for clothes for her.  We went from store to store (Michael was sitting in the book store as he is having some feet problems and can't walk very much), and she could not make a decision for the life of her.  I was very patient, and just went with the flow.  But after two hours, I was really wearing out.  Finally, after some prayers, she wanted to go to Gamestop and buy a video game for her DSI.  Hallelujah!  We went in, she was able to pick out two used games, and got out of dodge!!!!

As I reflect back on previous date nights and compare it to this one, there is a significant difference in her behavior.  We only went on one ride as she was so obsessed with spending her money.  On the way home, she was in a great mood and was pleased with the night, and I am glad we did it.  I did enjoy being with her, and the meal in particular was very enjoyable.  But it was very a very different date...

Image

I cannot explain how humbling it is when others see your child acting up.  We have been struggling with this ever since Akila started to walk and talk.  The stares, the sideways looks, the comments.  I don't just mean from strangers, I mean from family, neighbors, friends, professionals, and strangers.  Nobody wants their child to act up ever, let alone in front of other people.  It is always humorous when parents of young kids will apologize for their behavior or make excuses when their kids are just acting like typical toddlers.  I want to say, you haven't seen anything yet honey-your kids an angel.  Wait until Akila gets home.

When she was little, she was just "spirited" as many people would say.  High energy mixed in with a little bit of naughty.  Nothing too nutty.  But as she got school age, the behaviors worsened.  She has given us several tongue lashings in public, at stores or other places like that.  We look like a couple of wimpy parents as it is best to not respond to her when she gets all worked up.

We had a young woman in her early 20's here a few months ago who didn't really know us well or understand Akila.  She was witness to Akila going off on Michael when I was gone, and it was obvious she was in shock that he would "let" his child talk to him the way she was talking.  She wasn't talking actually, she was screaming hysterically and swearing.

So for 12 years we have been trying hard to not worry about what other people think, but it is impossible to do this entirely.  We wash our hair and try to dress nicely each day as we are concerned about or image to a certain extent, so it makes sense to a certain extent that we worry about what other people think.  But it is important to not be consumed with what others think and see, and this is something we are pretty good at.  As a matter of fact, the last several years, we kind of get a good kick out of it when someone witnesses something that is really crazy.

One of my favorite stories is when from about a year ago or so when we were going to our church for family pictures.  This is quite the ordeal with getting the girls hair done freshly within a few days of the picture date and getting Michael home in time for the appt.  After much stress to get out the door, we get to the church and can't find what room the pictures are being done in.  We run into our Executive Pastor and ask him if he knows where they are.  He takes his laptop out of his briefcase to look it up and sits down at the info desk.  He finds the info, and we are at the wrong campus (our church has 3 campuses, downtown Mpls, Arden Hills and Burnsville).  As he tells us this, Akila lays down on the floor and yells really annoyingly, "Jesus Christ!!!"

Michael and I just looked at each other, and tried not to burst out laughing.  He didn't say anything about it, and we just left.  And the funniest part, is that she has never before that, and never after that, used that phrase when upset.  If that had happened 4 or 5 years ago or more in our FASD parenting journey, we probably would have been mortified.  Now, we laugh at these things often.

But a new struggle I have been having in the past year, or certainly the past 6 months, is how she has been showing her really aggressive side to others which she has always conserved for us in the past.  When she was in the crisis home, I was relieved that she was raging (to show some people that we are not the cause of her raging), yet it also felt awful that she was lashing out physically at others.  Yet, I knew it was kind of expected, or at least something that happens fairly often there, and they are equipped to handle it.

Then in January, she went off on the OT we had just started to see, which was embarrassing.  Her therapist who has been working with her since mid-October, has seen plenty.  She works with Akila in school once a week and at home once a week.  Since November, the therapist has seen plenty of verbal aggression and bad attitude stuff.  Then in January, she got to see Akila smacking on me.  Several times during the home sessions, she has seen Akila in a bad mood talking smack.

Last night the therapist was scheduled.  Imani had a play at school we were going to watch so the boys and I ran errands after school and had L, the awesome new PCA, pick Akila up and bring her home to an empty home to hang out.  We went out to dinner before the play.  So the therapist and the PCA were here together with Akila.

Then today, L was texting me that it was really uncomfortable when Akila smacked the therapist in the face.  Oh my.  New level of embarrassment.  New level of grief.  I didn't find this out until this evening, and I left the therapist a voicemail apologizing.  She is great, and I know she doesn't blame us by any means, but it is still embarrassing.  Last week I asked the therapist if she has any other kids like Akila, and she said "No", right away.  She acknowledged how none of the things she can do make a dent in Akila's thinking patterns and behaviors.  She knows this, and I appreciate that about her.

When Akila was with a respite provider who is African American, she called her the "N" word.  Embarrassing.  Mortifying.  You know there has to be some part of this woman who wonders if we have used that term in our house.  She does not understand FASD at all, so I am sure she is probably thinking that.

I know I should not worry about what others think of us.  I know that I use to be one who judged others, all the time as a matter of fact.  It is one thing to have your child throw a tantrum in a store.  Or to call you a name or even swear at you in a store.  It is one thing to have your child smacking you daily and calling you every name in the book.  It is a whole other thing to have your child smacking other people.  It brings me to my knees each night, pleading for mercy.  Pleading for a solution.  Pleading for Akila.

Social workers and realtors

Waiting.  Not something I am good at which I blogged about recently.  So not a patient person.  I connected with our placement worker yesterday who knew nothing too new yet.  He did tell me that the Willmar organization he is looking into is a bit hesitant about taking Akila on given her diagnosis and behaviors.

So, I did something that social workers probably really hate.  It is similar to something that realtors hate.  I always hated it when we were trying to sell a house, and the people looking at buying it had to go through our realtor with questions.  Likewise, when we were buying a house, I wanted to talk to the sellers.  They knew way more about the house than the realtor does.

I appreciate the role of the realtor, and the social worker, but sometimes it makes more sense to cut the middle man, or middle person, out of the equation.  I don't mean entirely of course, their roles are extremely important and I appreciate their wisdom, experience and skills.  But they don't know the details of the house, when it got a new roof, how the jacuzzi tub works, where the tricky spots are in the gutters that you need to clean out each fall, where the switch for the outdoor outlets is hidden, etc.  I would rather hear this info from the owner.

Likewise, if a facility is looking at taking on a new client, like my daughter, and they don't completely understand her, they should talk to the mom, to me.  So I called them yesterday.  Had a great conversation with a lady who is involved in intake situations.  Answered some of their questions, and then spent a good part of the afternoon scanning restraint reports from the crisis home and emailing them to her so they could have a better feel for Akila.

The person said they would take the info I sent along with the info from our excellent placement worker and figure it out.  I am so praying that this will be a good fit.

PCA's

We have another new PCA who started recently, she is super sweet.  She worked the other night and it went really well, Akila loves her.  I noticed something interesting last night I want to share.

I blogged in the end of January about some similarities between how Akila has been acting and how an abuser acts.  In that entry I shared how after a new PCA had left, Akila turned mean and violent instantly, similar to someone who abuses their wife does.  Unfortunately, that PCA from that post is past her honeymoon phase now, and Akila has been pretty rude to her the past week or two.

One evening recently, that PCA, I will refer to her as J, was making mac and cheese or ramen noodles or something like that for Akila.  Akila yelled at her through the entire process that she was doing it wrong.  It was very similar to how she yells at us.  The next night, the newest PCA, I will refer to her as L, was making mac and cheese.  Akila started to tell her how to do some part of it, and then was being really sweet, saying "It's OK, you're doing a nice job" and smiling.  Akila was very sweet and supportive of L who was doing the exact same thing J had done the night before.

They had a great time, played with Polly Pockets, colored, played on the computer- it was great.  Then L said goodbye to Akila at the end of the shift and came into the dining room to fill out a timesheet.  Akila went up the stairs to my bedroom where Imani and Hezekiah were watching TV.  I was standing at the bottom of the stairs and I could see Akila in the door of my room.  She started to yell at the kids, and then stopped and asked if L was gone yet.  I said no, so she stopped and did not go off on the kids anymore.

It was very similar to the episode in January with J, where she did not want her to see Akila get rude.  Last night, she did not want L to see her being too rude.

Akila has always been like this, where she gets comfortable with you and is more willing to let loose.  Just so interesting to watch so closely.  It use to take her close to 6 months to get use to someone where she would let them see her behaviors.  I do wish the honeymoon phase was longer like it use to be, it is so hard to see your child being so rude to someone else, even if they are getting paid (minimally).  I do love our PCA's.