Saturday, October 13, 2012

Long time, no post

I'm sure many of you who have read this blog in the past assumed that either Willow was doing remarkably well.....or that we found a new family for her.

Neither are true.  Willow did go through a phase of what seemed like great peace in her heart.  It was a good time for our family.  However, in July it all started to unravel and now she is pretty much back to where she was years ago.  Daily melt-downs and tantrums.  She says she hates us.  She wishes we'd never adopted her from China. We are the most awful family she could imagine.  She wants a new family.

We have not given up yet.  Today we are starting her on Neurogistics supplements.  We are praying this will help her.  She has been on several ADHD meds since my last post including Tenex.   I will be posting here about how the supplements are helping.

Willow had her first dose this morning.  She takes more at dinner time and then at bedtime too.  She is playing outside today.

Wednesday, November 16, 2011

Still here.

Willow has had both good and bad days since my last post.  The good days are coming more and more often and we are so thankful for each and every one of them.  We have now tried Adderal, Adderal XR, Focalin and Intuniv.  None of these work for Willow. Her system just can not handle the stimulants in the first three and the Intuniv seemed great for a few days while she was on a 1mg dosage. Before we got to the second week where the dosage goes up to 2mgs her behavior reverted back to screaming and yelling and tantrums.  The 2mg dosage really pushed her to the limits.

So, being the handy-dandy, read everything I can get my hands on to try and help my child kind of mom that I am I started reading more about ADHD than about FAS.  Willow's therapist does not think she has FAS and part of me wants to totally agree with her.  More tests in the future will make a determination of whether or not she does.  In the mean time I am trying to deal with her ADHD.  It seems that our little one may have a magnesium and zinc deficiency.  When we realized the Focalin was not going to help Willow I bought some magnesium and zinc and she tried it.  WOW!  What a difference!!! She was calm and down-right delightful almost every day.  When she went back to the Dr he wanted to try the Intuniv to see if it would help and he kind of shrugged when I told him about the magnesium and zinc. I don't think he believed me that it was helping her as much as it did.  Looking back I wonder if the Intuniv was working at all or maybe she just still had some magnesium and zinc in her system from our little trial run with it.  Once we realized that Intuniv was not going to work for her I gave her system a couple of days to settle and I started her on the magnesium and zinc again.  Our sweet, calm, delightful child has returned!!!  She has been pleasant and giggling and PLAYING with her siblings! REAL playing and not just being bossy or playing near everyone else!  She plays and laughs now!  She has never, EVER been able to play card games or board games with us because if she didn't win well that was just the end of the world.  She plays UNO now. She will play over and over with anyone who will play with her!  If she doesn't win she is fine with it!  I don't know if this will last but for now we are enjoying each and every moment of Willow's delightful little personality and her wonderful hugs and giggles!  

I will post again soon to let everyone know if this lasts.  Here are some links to articles on magnesium and zinc. Please consult your child's pediatrician before using magnesium or zinc.
http://www.livestrong.com/article/328125-magnesium-deficiency-adhd/
http://www.adhdnews.com/testforum/test2737.htm
http://www.ncbi.nlm.nih.gov/pubmed/9368235

Thursday, September 8, 2011

Still not right

Willow is having another day that's not very good.  She wants a pet of her own like a hamster or guinea pig. We can not allow her to have a small pet until she can control her rages. She has never harmed anyone or any of our pets but we can't take a chance on something so small.

Lots of screaming, lots of "I HATE MY FAMILY", "I'M RUNNIG AWAY!" today.

She did good through her homework after she rested for a little while on her bed and she's been okay since then.   The days right after she started on this medication were so wonderful.  I miss them even though they were just a couple of days ago and lasted less than a week.  I miss my sweet little girl.  I could see who she really is during those days and she is an awesome person!

It will take a while to find the right medication and the right dosage.  I will not give up.  She is so worth it!

Willow's Story Part 2

The day of the appointment finally came. It took about a month to get in to see the therapist we will call "B".  She'd mailed us many pages to fill out about Willow. I think we answered every possible question there could be about her.  When we went back to B's room Willow turned on the charm and acted shy.  She wasn't her usual self talking a mile a minute.  It didn't take long for her to warm up to "B".  She thought B was pretty and she laughed when B talked to her.  B talked to us for quite a while and went over every single question we had answered in the paperwork to be sure we had answered the questions as we had intended to.  Some of them were worded so that it was hard to give an answer you thought was appropriate. The entire time she was watching Willow and making notes.  We didn't learn a lot in this meeting but scheduled another visit for the following week when she would tell us her thoughts about Willow and what she thought was going on with her.  That was a long week!  A week of praying that a miracle was coming up!

When I took Willow to the next appointment with B she had me do some interaction with her.  I had to draw something and then Willow was suppose to copy it.  She did a pretty good job.  Next I had to tell her about the day we met her.  Willow listened intently for about 30 seconds and then completely zoned out.  B snapped her fingers and asked "Willow, what did Mom just say?".  Willow did her crazy laugh (Not her sweet laugh that I adore. This laugh is like something out of a scary movie.) and said "I dunno! Something about China and me."  The next task was to teach Willow something.  I decided to teach her how to count to 5 in Chinese.  "Willow, do you know how to count in Chinese?"  She gives me the spacey look and says, "Nope!".   "Cool, I'm going to teach you!  It's easy!  Ready?"  I put up one finger and said "Yee".  She put up one little finger and repeated "Yee".   Two fingers up. "Uhr".  She put another little finger up and said, "Uhr".
"Good job, Willow!" Third finger up. "Sahn".    Nothing.  "Willow, put your finger up and say 'sahn'. It means 3 in Chinese."   Totally zoned out.  The therapist asks if she does this very often.  I think for a minute and tell her that she does but usually it's when we tell her to pick up her toys or clean her room.  Our last task is to put lotion on each other's hands.  First Willow puts lotion on my hands. She enjoys doing this because she knows mama likes lotion and this one smells yummy!  Then it was my turn to rub lotion on Willow's hands. At first it was great!  She was grinning and loving this positive attention but it wasn't long before you could tell she was uncomfortable.  She started pulling her hands back from me but not completely away.

Once these tasks were done she told Willow it was time to clean up everything we'd used.  That meant closing the lotion and handing it back to B and picking up some papers.  Willow did as she was told without complaint.  B told me to leave the room for about 5 minutes and then come back.  I asked if I should tell Willow I was leaving.  She said I should.  I leaned down in front of Willow and said, "I have to go to the restroom. I'll be right back.  You stay here with B."   When I opened the door to come back into the room Willow looked at me and gave me a big smile and reached out for my hand.

B later told me she asked me to leave to see what Willow's reaction would be when I returned.  She said many children will not acknowledge the returning parent.  She said Willow's reaction was very positive.

B had Willow draw a nest.  Then she told her to draw a baby bird.  Willow drew the baby bird outside the nest.  She also had her draw a picture of her family.  Willow worked on it while B and I talked.  When I looked down I couldn't help but smile.  She drew everyone in our family and she put hearts beside her rendering of me and hearts beside her daddy and a big one between us.  B asked her why she drew the hearts and she said because they love me and mommy loves daddy and daddy loves mommy.  The family members were all close together with smiles.

B's assessment of Willow was that she did not have RAD.  (Thank you, Lord!) She did think there were some attachment issues and some behavior issues. Time to get to work.

We saw B weekly and started to see some small changes in Willow.  B was teaching her to regulate her temper.  If she was mad she could get her "angry crayons" and draw a picture of what was making her angry. She taught her to breathe deep when she was mad.  She taught her to say "I am angry" instead of screaming.  It was a learning time for all of us.  Willow was doing better but there were still many, many days of screaming and rages.

During this time Willow told us frequently that she wanted her "China mama".  B suggested we work on a LifeBook with her during appointments.  We chose this LifeBook from Amazon.com.  Willow was THRILLED to be working on her book and talking about her "China Mama".  We know she loves her birth mother and we encourage her to talk about her.

The rages continued but were not as often it seemed.  Her frustration level seemed to be less but we knew  there had to be more going on in her little head. She still screamed she hated her family and couldn't figure out why she ended up with THIS family. She threatened to run away daily.  After saying this she would always run to me later and say, "Mommy, I'm sorry! I love you!" and give me a huge hug.

Willow had become quite comfortable with B by this time and B could pretty much read her like a book.  She'd never seen Willow become angry.  Slowly B started pushing Willow's buttons to get a reaction.  She would sit close to her and that would start it.  Willow liked B but she wanted space.  B finally got a reaction from her one day.  I don't even remember exactly what happened but the screaming started and B worked with her to get her through it.  She asked Willow for a hug when it was over and Willow gave her a huge hug.  B told her that after all of that frustration she probably needed a hug to make sure she had some extra love to fill her tank back up.  Willow smiled at B and nodded then turned to me and said she wanted to go eat Chinese food.   B mentioned to me that she thought a visit to a psychiatrist was in order. I agreed.  I was so glad we were going to see someone who might provide more help.  She gave me the number of a psychiatrist and I went home to make the appointment.  It took two and a half months to get in to see him.  In the mean time Willow continued to work with B weekly.

I honestly don't know how I would have made it through these past months if B had not been there.  All I had to do was call her or email her and I would hear back from her very quickly.  We took a short vacation and Willow who usually does great on our short trips bottomed out.  I emailed B and she called me back.  I'm sure the people in our hotel thought I was a crazy lady sitting in the lobby on my cell phone crying my eyes out.  Anyone going through this needs someone to talk to, someone who understands and can help.  If your child is like Willow I urge you to find a therapist who will not only help your child but will also talk to you and help you through the really bad days.

I am still amazed by the number of views this blog is getting.  I appreciate each comment and email.  I hope by reading this that you know you are not alone.

I will continue Willow's story soon.  It takes me a while to get my thoughts together.  I want to be sure I tell everything as accurately as I can because I have looked for YEARS for someone who was going through the same thing and I never found anyone.   I want you to know there is hope.

Wednesday, September 7, 2011

Not All Sunshine & Roses

I am working on Part 2 of Willow's story but I truly do not want anyone to think that her problems have disappeared. It is all a work in progress. I don't want any of you to think that we have had a miracle cure and that life is peachy every day.  Right now at this very moment we are taking a little break from homework because it is just too much for Willow to handle all at once after school.  When she gets overloaded she breaks pencils, throws books, tears up papers, screams, cries, slams doors, etc. Today so far it is just screaming, lots of erasing (seeking perfection), door slamming and paper crumpling.

The ride home from school today was not fun either. More than once she screamed out that she hates one of her siblings because she was interrupted when she was talking.

Since we've been home she has had a banana and some water.  She's been out to play in the dirt and ran around and around with the dogs.  She played on the swings and worked up a good little sweat.  We didn't come straight home and start on homework. That would be impossible for her. It's all about finding a smooth transition for her from one thing to the next.

She is on medication and she is in the adjustment phase. It is helping tremendously but the dosage isn't right yet. We will change it up again in the morning according to her doctor's directions and pray for good results for her and a better day tomorrow.

More Than 700 Views In 24 Hours

Amazed. Simply amazed.  This blog has now had over 700 views in the past 24 hours. People from all over the world have come here to read Willow's story.

I want all of you to have a voice or a shoulder to lean on if you are going through struggles like we have had in our home.  All FAS children are not alike. Your child may not rage like Willow but has other things going on.  I have created a Yahoo group for families who have an adopted child with FAS or suspect that their child may have FAS and are looking for others to talk to.

I have made the group as private as possible.  You can not search member names and email addresses are not shown on posts.  If you truly want privacy you might want to create a new Yahoo name to use that others will not know.  This is what I have done.  If Willow wants to tell her story in her own words in the future that is up to her but for now we will protect her privacy.

Come and join us.  You really are not alone in this.

http://groups.yahoo.com/group/FASChinaAdoption/
FAS China Adoption