Making New Connections

After the International Hemispherectomy Conference, affectionately known as HEMICON, I was determined to find a practitioner to perform the Anat Baniel Method of learning for Angie.  Anat Baniel herself was the keynote speaker at the conference and her presentation gave me hope that Angie could continue to make enormous progress by making new connections in her brain. We met families whose children participate in ABM and their stories were full of hope and promise.  The videos of the children's movements were remarkable and I knew I wanted this for Angie.

 ABM is based on the theory that, "The brains of infants and children are extremely changeable needing to form all the brain patterns associated with voluntary action. Their brains are constantly expanding and mapping new territory." The method accesses the remarkable capacity of the human brain to form new connections and new patterns, and reach levels of performance never achieved before.  After reading and  believing that brain structures become fixed and cannot change after early childhood this is the best news ever.  Brains can change at ANY age!  Who knew? 

We found Kathy, who practices ABM in Portland, and last week Angie had a series of 6 lessons, sometimes two in one day.  It is hard to describe all of the changes we are observing because some are very subtle.  These subtle changes will build into new experiences and abilities and we continue to facilitate Angie's learning.  After her third lesson with Kathy, Angie and I were walking to our car and she said, "Mom, Righty wants to hold your hand".  Stunned, I reached out and she held my hand with Righty.  This was the first time EVER that she has moved the fingers on her right hand independently.  Now this, was HUGE!!!

We are so excited to see the changes that will keep coming as we carry over what we have learned about ABM.  Angie will have another series of sessions in 4-6 weeks and we cannot wait to see her victories.  We are so thankful for Kathy and her patience and knowledge.  This has been a huge game-changer for Angie, and for us.

   

Making New Connections

After the International Hemispherectomy Conference, affectionately known as HEMICON, I was determined to find a practitioner to perform the Anat Baniel Method of learning for Angie.  Anat Baniel herself was the keynote speaker at the conference and her presentation gave me hope that Angie could continue to make enormous progress by making new connections in her brain. We met families whose children participate in ABM and their stories were full of hope and promise.  The videos of the children's movements were remarkable and I knew I wanted this for Angie.

 ABM is based on the theory that, "The brains of infants and children are extremely changeable needing to form all the brain patterns associated with voluntary action. Their brains are constantly expanding and mapping new territory." The method accesses the remarkable capacity of the human brain to form new connections and new patterns, and reach levels of performance never achieved before.  After reading and  believing that brain structures become fixed and cannot change after early childhood this is the best news ever.  Brains can change at ANY age!  Who knew? 

We found Kathy, who practices ABM in Portland, and last week Angie had a series of 6 lessons, sometimes two in one day.  It is hard to describe all of the changes we are observing because some are very subtle.  These subtle changes will build into new experiences and abilities and we continue to facilitate Angie's learning.  After her third lesson with Kathy, Angie and I were walking to our car and she said, "Mom, Righty wants to hold your hand".  Stunned, I reached out and she held my hand with Righty.  This was the first time EVER that she has moved the fingers on her right hand independently.  Now this, was HUGE!!!

We are so excited to see the changes that will keep coming as we carry over what we have learned about ABM.  Angie will have another series of sessions in 4-6 weeks and we cannot wait to see her victories.  We are so thankful for Kathy and her patience and knowledge.  This has been a huge game-changer for Angie, and for us.

   

HEMICON 2016

We have just returned from Hemicon 2016, also known as the International Hemispherectomy Conference.  Toby, Angie and I traveled to Denver for what will be one of the most memorable trips of our lives.  This was Angie's first airplane trip and she was truly entertaining to watch and listen as we took off for the first time.  Her squeals were heard throughout the airplane and our fellow passengers could not help but smile.

As we planned to attend the conference, Toby and I were excited for Angie to meet other children who have had "her surgery" as she calls it.  We were not disappointed as she boldly approached others, peers and parents alike, and introduced herself the entire time we were there.  Soon after we arrived, we met Levon and his parents and the two kids were inseparable for 3 days straight.  Aren't they cute?

I prepared myself to feel emotional in the presence of the strong, courageous, ferocious parents whose children have overcome overwhelming odds.  And I did.  A few tears were shed as I realized something: We all knew the same thing.  Small accomplishments are actually huge victories and our kids can do anything they set their minds to.  We have all cheated death and have come out realizing how precious and valuable our children's lives are; something we do not forget in the midst of the battles we face on a regular basis.  I have found my people. Oh, and Angie caught Toby and I having fun and snapped this picture:

Many of the families have known each other for years but it did not matter.  They embraced us just the same and we became members of a club we never asked to join but now would not trade for a million dollars.  We shared stories of trials and victories and knew that we were understood.  Interestingly, though, we were not sad. There was a collective culture of gratitude, acceptance of our situation, and pure joy.  I have always recognized that Angie's resilience and acceptance of her condition are unique but now I wonder.........what is it that makes our children so brave?

For the first time, we met other families whose children are diagnosed with Sturge-Weber Syndrome.  All of the children were younger than Angie and were were grateful to be able to share her positive experience since surgery and her many accomplishments over the past five years.  We made connections that will last and hopefully grow over the years.  I can't wait to see their children thrive and grow like our Angie.

I came home with a long to-do list.  Therapies to research and schedule, new testing to arrange, and activities to explore.  I am thankful for the team who organized the conference and the top-notch presenters that attended.  Each one is a dedicated parent of a child with special needs who spent countless hours to plan and make sure our experience was the very best.  You are all my heroes and I cannot wait to attend again next year!

Summer

This is how our summer is going so far:

Miss Angie is swimming almost every single day, sometimes twice a day.  She is taking lessons and her progress is amazing.  I am so impressed by the instructors at our pool.  They are patient and kind and always make sure she understands what they are working on.  It is the highlight of my day to watch her lessons after my day at work.

Toby and I celebrated our 29th wedding anniversary this week.  Our good friends, Jeff and Heather offered to come to Clatskanie to stay with the kids so we could get away for the weekend.  There are few people that we would/could leave in charge of our crazy household and Jeff and Heather are on the short list.  We were so grateful for our weekend, which we spent in Oregon wine country in the sunshine.

Yesterday we attended a permanency hearing for Angie's DHS case.  We have struggled with our relationship with the agency due to poor communication and frustration on our part.  At the hearing, we did not share the DHS perspective that Angie's adoption is "on time" when we are 13 months into a process we were told would take 6-8 months.  I am extremely proud of Toby for his request for specific dates when the remaining steps would be completed, even though we did not receive concrete answers.  It is disheartening to feel powerless in a process that means so much to us.  We believe that we are approximately 3 months away from becoming Angie's forever family on paper. Almost time to  start planning the gigantic celebration that will follow the finalization of her adoption!

Next week, Toby, Angie, and I will travel to Denver for the International Hemispherectomy Conference.  We are excited for Angie to spend time at a day camp with other children who have experienced the same dramatic brain surgery.  Toby and I are looking forward to hearing the presenters speak about what we might expect going forward and how we can help Angie reach her full potential.  I fully expect the experience to be life-changing for all of us.  And again, we have someone special, our daughter Jordan, who is willing to hold down the fort at home.

There is a theme here, as I write.  We are surrounded by special friends and family who are willing to come into the trenches with us to support our family.  Please know that we see what you do and are grateful for every one of you.  Your messages of support and prayers, gifts of time, and even brief "check-ins" to see how we are doing mean more than you know.  We are strong because of the team of people by our side and we do not question that for a moment.  Words are not enough to thank you.

Thank you for your prayers, my friends.  After my last post I received multiple messages with kind words, offers of prayers, a coffee card, meals, and flowers.  I never intended my story to make you feel you had to do for me.  I was holding true to my original commitment that this blog would be real.  But know that I am grateful. Your kindness has been a true gift.

We are plugging along and our strength comes largely from this girl:

Because of Angie, our days are filled with "I love you", "You are precious" and "I am so lucky".  Who can stay in a mood with all of that positive going on?  She embraces life with all she has got and she reminds me of all that is good.

Angie has become a pool rat since summer started. She asks to go swimming every single day.  This week she started lessons and she is having a blast!  I am surprised and thrilled at how free she is in the pool, unencumbered by the challenges she experiences on dry land.  She is amazing!  And so happy........

Toby, Angie and I will be leaving for Denver in about two weeks.  We are traveling to the International Hemispherectomy Conference where Angie will attend day camp with other children who have experienced hemispherectomy surgery.  While she is there, Toby and I will attend conference sessions about what we might expect moving forward and how we can best help Angie to reach her full potential.  We are extremely excited and I have no doubt that even among others with similar histories, our girl will shine.  She is so anxious for her first airplane trip.  We will make friends that we will have for a lifetime, who truly know what it feels like to walk in our shoes.

We have been asked about Angie's adoption.  It is still happening, although MUCH slower than we expected.  We will go to court again next week and we expect to hear the same story as last time.  DHS is overwhelmed, understaffed, and trying as hard as they can. We are tired, and so is Angie. She wants to be a Harris.  For now, though, she is loved and safe.  Some day she will be a legal member of our family and when that day comes, we will celebrate like crazy.  I can't wait.

We have so much to be grateful for.  Than you for reminding me with your kindness.  We have been surrounded by love when we need it most. That is what life is all about, right?  Showing up when someone is down and paying it forward.  I can't wait until I can do the same for you.

A Tough One

This is going to be a tough one.  I have avoided writing for the past couple of weeks because I have not wanted to spread my negativity to others.  It is mine.  Today, though, I realized I am not being true to my original commitment to be real and honest.  So, here it goes......

First, Miss Angie is amazing.  She is healthy and thriving and everyday with her is a gift.  She had a sleepover with some of her favorite people, went to a band concert where she tells me she danced during the concert, and she is excited to start swimming lessons, which she tells me EVERY SINGLE DAY.  She is doing "normal" like only she can.  In fact, I think she is the strongest one in the family right now.

We have learned that Baby Ezra has West Syndrome, which doctors identify as "catastrophic childhood epilepsy".  It is a lifelong disability causing permanent developmental delays. Some other test results are still pending, but this is what we know so far.  Ezra is at home again now and he is receiving strong steroid treatments for the seizures.  The treatment cost is an astronomical $2000/day.  Don't even get me started on how I feel about drug manufacturers and insurance companies.  Actually, the drug company has a program to pay the patient co-pays for the medication and Ezra's insurance company won't accept their payment. So many challenges ahead for little Ezra and his parents.....

Then there is Levi.  I have been particularly quiet on this subject.  Now, I am going to share with the hope that others will be educated and may be able to pay it forward to someone else who needs support and understanding.  Levi has Alcohol Related Neurodevelopment Disorder, commonly known as Fetal Alcohol Syndrome.  His biological mother used opiates, methamphetamine, barbiturates, and marijuana during her pregnancy as well.  Levi's brain is severely and permanently damaged and his condition was 100% preventable. He was not given a choice.  I could go into great detail about ARND and FAS but I will just share the basics:

Brain and central nervous system problems

Problems with the brain and central nervous system may include:

• Poor coordination or balance
• Intellectual disability, learning disorders and delayed development
• Poor memory
• Trouble with attention and with processing information
• Difficulty with reasoning and problem-solving
• Difficulty identifying consequences of choices
• Poor judgment skills
• Jitteriness or hyperactivity
• Rapidly changing moods

Social and behavioral issues

Problems in functioning, coping and interacting with others may include:

• Difficulty in school
• Trouble getting along with others
• Poor social skills
• Trouble adapting to change or switching from one task to another
• Problems with behavior and impulse control
• Poor concept of time
• Problems staying on task
• Difficulty planning or working toward a goal

Levi has every single one of these symptoms and some that are not listed.  Just one more fact: Alcohol use is far more damaging on the developing brain than drug use.

If you know our family, you know that Levi has received a variety of treatments for his conditions since birth, including several out-of-home placements.   In early April, we realized that we needed another secure placement for him when he started exhibiting risky behaviors, such as leaving home and school for hours at a time.  Children with drug and alcohol exposure are particularly vulnerable to becoming victims due to their poor reasoning skills and inability to sense danger or predict consequences.  Levi's social and emotional functioning level is at age 6 or 7.  We were terrified for his safety.

Unfortunately, the Department of Developmental Disabilities could not find a placement this time.  Levi became #16 on the waitlist and we were told placement might happen in about 6 months.  In late April, we begged for a "crisis placement" which is supposed to take 24-48 hours and we were again turned away.  We sought help at a children's hospital and with law enforcement-still nothing.

Last Friday, our worst fears were realized.  Levi was playing with matches in the school bathroom and he started a fire in the garbage can.  He was interviewed for over 2 hours, arrested and taken to the juvenile detention facility for 4 days.  I am not ready to write about that particular experience yet, but I will tell you this-it was devastating.  Levi is charged with three misdemeanor crimes and he is now involved in the juvenile justice system.  The school IEP team has determined that his behavior was a manifestation of his disability and he will not be expelled but we have chosen for him not return to school this year.  The legal process will take time and Levi will be held accountable for his actions.  So, indirectly, will Toby and I.  Toby is currently unable to work and is at home with Levi, who is under house arrest.  Levi is very, very sorry and regrets his actions, which is often not the case for children with FAS.

I know this is getting long, but I share it in detail to try to facilitate understanding. The situation is so complicated.  Toby and I do not believe that Levi should be relieved of responsibility for his behavior, but we do believe his disability should be considered and we believe it will be.  Our family has been treated with respect by school staff and by the juvenile case manager and they have educated themselves about Levi and his disability.  We are overwhelmed by sadness and feel that Levi, and our family, was let down by the systems that are supposed to support and protect children with disabilities.  

Please share our truth when you hear people gossiping about Levi.  We live in a small town and we know people are talking.  Please think of Josh and how this affects him when you consider telling our story.  Please pray for Levi as we continue to advocate for a placement for him where his needs can be met.  I appreciate being able to tell our story and be heard. Thank you to all who have already reached out to support our family. It means more than you know.