Tuesday, September 13, 2011
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!
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.
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.
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
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
Tuesday, September 6, 2011
Signs and Symptoms
I have received several emails today asking about what to look for if you think your child may have Fetal Alcohol Spectrum Disorder. The best descriptions we have found to help us are here. We are not doctors and we saw many professionals before Willow was diagnosed with Fetal Alcohol Syndrome.
Personally, I believe Willow has partial Fetal Alcohol Syndrome or Fetal Alcohol Effects. We will know more as time goes on and she matures. I can share with you the symptoms she has now:
Me: "Yes, Willow, it will hurt. You could die."
Willow: "No, I don't think I would die. It might be fun."
I also have to say that Willow is the most compassionate child I have ever known. If she knows someone needs something she loves to be the person there helping. She loves her family. She does great in school. She has fabulous eye contact with everyone in our family. She loves to be hugged and she gives wonderful hugs that always include a little pat on the back. She is loved and adored by her mama. (Her very tired mama.)
Personally, I believe Willow has partial Fetal Alcohol Syndrome or Fetal Alcohol Effects. We will know more as time goes on and she matures. I can share with you the symptoms she has now:
- Small eye openings
- Somewhat smooth philtrum
- Low Birth Weight
- Small Head Circumference
- Sensory Issues
- ADHD
- Difficulty learning from consequences
- Immature behavior (lots of baby talk)
- Emotional outbursts (daily)
- Poor impulse control
- Poor judgement
- "Hockey Stick" palmar crease
Me: "Yes, Willow, it will hurt. You could die."
Willow: "No, I don't think I would die. It might be fun."
I also have to say that Willow is the most compassionate child I have ever known. If she knows someone needs something she loves to be the person there helping. She loves her family. She does great in school. She has fabulous eye contact with everyone in our family. She loves to be hugged and she gives wonderful hugs that always include a little pat on the back. She is loved and adored by her mama. (Her very tired mama.)
Willow's Story Part 1
The moment we met Willow we knew that she was different. Aside from her special needs we were aware of there was definitely something different about her. She stole our hearts with her first curious glances at us from the hallway. When she was brought in we noticed her gait was not steady and just something.....something was different about her. Didn't matter. God sent us to bring this magnificent little girl home and nothing could steer us from this course. She was our daughter and we loved her already. She was afraid of everything and nothing at the same time. All of this is just a normal part of the transition during adoptions. Right? She rocked back and forth on her knees. She banged her head on the wall. I'd read about this and I knew that with love and time it would fade away.
Having just met Willow we knew that we were in the honeymoon phase. She laughed and ran and played. Her giggle was the cutest thing! One day while we were still in her province she picked up a bottle of aspirin. I told her "no no" and shook my head and took it from her hand. The next 30 minutes will be forever etched in my mind. She started screaming, stomping, hitting and flinging her little body back and forth. wow. I remember thinking "Whew! I will be glad when we get past this toddler tantrum stage!". But now years later we have still been dealing with these tantrums and rages on a daily basis. In the years since we adopted Willow we had ONE day that she did not rage. One. Probably not even 24 hours. It has made me very tired, I can only imagine how tired she must be too.
We could never be certain about what exactly would set Willow off. Maybe one of her siblings would pick up a toy she had been playing with earlier in the day. or the day before. or last week. Maybe she would drop a morsel of food on the table. Maybe her socks wouldn't be just right. Maybe a toy car wouldn't go far enough when she pushed it. Maybe I would hold one of her siblings before her. Totally unpredictable stuff and all new to us.
I read and read about sensory issues. Yes! This is it!!! THIS is what we are dealing with! Praise the LORD I had found the answer!! I found a sensory therapist. He was great and worked with her weekly. She loved going and playing games. Tagless shirts? CHECK! No seam socks? CHECK! I did everything I could to make her sensory overloaded world right. But it didn't make anything right. It didn't help the rages at all. None. She was just going to a very expensive play time. We decided to stop the sensory therapy. The rages continued and we gave up on socks.
I approached her pediatrician about all of this. She said she thought that seeing the on-staff therapist might be beneficial. HOORAY!!! Let's do this and make our girl better! We had many, many appointments with the therapist. She was a wonderful lady and I understand that she has helped many children in our area. She pretty much uses the same principles as Super Nanny. However, her techniques did nothing for Willow. We stopped seeing this therapist too.
Months went by and the rages continued. Never in public. Only at home and I was her target. Anyone else meeting Willow could not see what we saw at home. My mother-in-law was astounded when she saw the first rage when our family went on vacation. She couldn't believe her sweet grandchild was lashing out with such venom at me. Family members just shook their heads. My mom told me once when Willow was about 3 years old, "I'm afraid she will murder you in your sleep when she is older." Yes. That bad.
I read Jenny McCarthy's book Louder Than Words and I thought maybe.......MAYBE Willow is on the autism spectrum. I read about probiotics and started giving her supplements. These did seem to calm her a bit but not enough to see the huge changes we knew she needed.
When Willow started school I talked with her kindergarten teacher and told her about the rages. She looked concerned but I assured her that it only happened at home and was directed at me. I never got a single bad report from the school or this teacher about Willow's behavior. Every day she brought home her little behavior chart with a smiley face on it. We were so proud of her that she could hold it together during school. BUT as soon as the door of my car closed she was ready to rumble with mama. Before we could leave the parking lot she would be screaming at me about her car seat, lack of snack, the sun shining on her, the radio not being on or being too loud. Always something. always.
Did we ever consider disrupting Willow's adoption? Yes. Many times. It often felt like our family was on the verge of falling apart into a million tiny pieces that could never be put together again. But I would look at her face and the love I felt for her was a million times stronger than my desire to relinquish her custody. She did not fit the profile of a child with RAD. In some ways I know she did but in my mama's heart I knew this wasn't what we were dealing with. If it had been RAD the story may have had a completely different ending. Every time we tearfully discussed finding a new home for our little girl we would always decide to give it six more months. There had to be something we could do for her. We prayed that God would give us strength and help us find whatever it was Willow was needing to straighten her upside down world.
One day on Facebook I was chatting with a friend who had adopted a beautiful child. This was the child of their dreams but their dreams quickly faded. Like Willow they knew that something simply was not right. They were not prepared to deal with the RAD diagnosis they were given after months and months of therapy. This family had no other choice but to find another family for their adopted child in order to keep their family safe. She told me of things the child did and I shuddered. No, Willow wasn't like that. Thank God. Willow was not that far gone. I prayed for their child and I prayed for my friend. Even though we weren't going through the same thing we were on a similar journey. This particular day we were chatting and she mentioned a local therapist they had used who was wonderful. I knew it couldn't hurt so I made an appointment with this therapist for Willow. Meeting this therapist was the turning point in Willow's life.
Monday, September 5, 2011
We are here.
If I had known where we would end up on August 31, 2011 I think I would have attempted to keep a journal of the days leading up to this point. The days filled with worry and wondering exactly what we were dealing with.
We wish to keep our family life private. Having read the title of this blog you can certainly see where this journey has led us. We have landed in a place we never thought we would be. Our little Chinese princess has been diagnosed with Fetal Alcohol Syndrome. She is not a "worse case scenario" as the doctor plainly stated but she does have difficulties in her day to day life and probably always will. Since we received this diagnosis I have contacted many people who are very much involved with special needs adoptions from China. Some people I know and trust and have used our real name. Others, I contacted from an email address I made up just for this purpose. No one, not a single person, knows of another child adopted from China who has been diagnosed with Fetal Alcohol Syndrome.
I wonder how it can be that of the thousands and thousands of children adopted from China that our daughter is the only one with a diagnosis of FAS. It would be wonderful if there were none but surely there must be others who have yet to be diagnosed or others whose parents have chosen to keep this diagnosis to themselves to protect their child's privacy. We are doing this so others may have as well. It is that "Mama Bear" that comes out when you hear that even the slightest thing may be askew in your child's life.
I don't know how this story of "Willow" and her life will play out through my words. I haven't really thought it through where I will start. I just want other families out there to know that they are not alone. I also want to know if we are alone. It's okay if we are.
Please share this blog with anyone you think may be interested. I will share Willow's story in the days ahead.
We wish to keep our family life private. Having read the title of this blog you can certainly see where this journey has led us. We have landed in a place we never thought we would be. Our little Chinese princess has been diagnosed with Fetal Alcohol Syndrome. She is not a "worse case scenario" as the doctor plainly stated but she does have difficulties in her day to day life and probably always will. Since we received this diagnosis I have contacted many people who are very much involved with special needs adoptions from China. Some people I know and trust and have used our real name. Others, I contacted from an email address I made up just for this purpose. No one, not a single person, knows of another child adopted from China who has been diagnosed with Fetal Alcohol Syndrome.
I wonder how it can be that of the thousands and thousands of children adopted from China that our daughter is the only one with a diagnosis of FAS. It would be wonderful if there were none but surely there must be others who have yet to be diagnosed or others whose parents have chosen to keep this diagnosis to themselves to protect their child's privacy. We are doing this so others may have as well. It is that "Mama Bear" that comes out when you hear that even the slightest thing may be askew in your child's life.
I don't know how this story of "Willow" and her life will play out through my words. I haven't really thought it through where I will start. I just want other families out there to know that they are not alone. I also want to know if we are alone. It's okay if we are.
Please share this blog with anyone you think may be interested. I will share Willow's story in the days ahead.
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