Anat Baniel Method

So, as I was listening to the Thrive Doctors on Contact Talk Radio, I was introduced to a new therapy method called the Anat Baniel Method for special needs children.  Anat Baniel is a disciple of Dr. Moshe Feldenkrais who developed the technique for body rejuvenation and recovery back in the 1940's in Jerusalem.  Baniel tweeked his system and started her clinic in Marin County up in San Francisco. Claims have been made that children who doctors have dismissed as hopeless cases are thriving and living beautifully as adults.  One such story recounts a girl who has 2/3 of her cerebellum missing but started the method at 6 months and now at 20 years of age has earned two masters degrees, is a practicing social worker, wears high heels and is to be married!   I am so intrigued by what this method can do for Lucas that I paid the $100 for a 10 hour training video from the Anat Baniel Center.  I also found a practitioner here in Long Beach.  I am hoping to attend  a free seminar held at the We Be Well Wellness Center in Long Beach with Gabriel to find out more information.  I doubt the therapies would be covered by Kaiser insurance but if it indeed yields  the amazing outcomes they claim, then I am so willing to pay out of pocket.  The center does offer discounted rates for purchasing multiple sessions at one time.  I wonder how many sessions need to be booked before results can be seen.

There are so many different modalities for treating autism and neurodevelopmental delays and I am not sure what would work for Lucas.  There is the Relationship Development Intervention(RDI Method) and the  neurodevelopmental learning institute program in Marina Del Rey.  "Relationship Development Intervention (RDI) is a trademarked proprietary treatment program for autism spectrum disorders (ASD), based on the belief that the development of dynamic intelligence is the key to improving the quality of life for individuals with autism. The program's core philosophy is that individuals with autism can participate in authentic emotional relationships if they are exposed to them in a gradual, systematic way. The goal of treatment is to systematically build up the motivation and tools for successfully interacting in social relationships, to correct deficits in this area that are thought to be common to all people with autism." (Wikipedia)

 six objectives are: 

• Emotional referencing: The ability to learn from the emotional and subjective experiences of others 

• 

  Social coordination: The ability to observe and control behavior to successfully participate in social relationships 

• Declarative language: The ability to use language and non-verbal communication to express curiosity, invite interactions, share perceptions and feelings and coordinate with others 

• Flexible thinking: The ability to adapt and alter plans as circumstances change 

• Relational information processing: The ability to put things into context and solve problems that lack clear cut solutions 

• Foresight and hindsight: The ability to anticipate future possibilities based on past experiences 

(from Autism Speaks)

RDI focuses on cultivating the building blocks of social connection—such as referencing, emotion sharing, coregulation, and experience sharing—that normally develop in infancy and early childhood. RDI is a family-based program, where trained consultants support families to alter their interaction and communication styles. There is a period of parent education, followed by an assessment of both the child and the child-parent relationship. After that consultants support the family through a set of specific objectives to build a "guided participation" relationship between parents and child that will allow the child to once again become a "cognitive apprentice" to the parents. Once the cognitive apprenticeship is in place, the family can move on to specific cognitive remediation objectives for the child. These are developmentally staged objectives designed to restore optimal neural connectivity through a series of "discoveries" and "elaborations".

The latter method is claimed to provide "measurable, significant improvements in general intelligence, and IQ, language and auditory processing, cognitive abilities, memory function, learning abilities and academics which consistently outperform other singe-method approaches." Both sound costly and not covered by our insurance.  In August, we are to have our first Regional Center meeting at the school district and I have to decide what I am going to do about his education.  Do I send him to the crappy Montebello School District public special education program, an expensive private school like Walden or Montessori or the Westmoreland School for autism in Pasadena - nonpublic school (whatever that means)?  Where would he do best?

Lucas is getting taller and heavier, although he still looks very lean.  He climbs out of his playpen and has bonked his head on the floor twice, already!  He has started all his services and I am a busy mom on the days I am not working.  He has PT, OT, infant stimulation twice a week for one hour each session; ABA three times a week for 2.5 hours per session for a total of 7.5 hours per week, speech therapy once a week and now I am thinking of adding a session of Anat Baniel method.  He seems to enjoy his sessions and the attention he gets from everyone; he thinks it's play and not "therapies".  I, on the other hand, am exhausted by the end of the week.  I think the main energy drain is carrying him around as he can't walk yet and is getting bigger and heavier.  My days feel like a puff of smoke that is gone too fast...

I pray God lead me to wisdom and good judgment in choosing the therapies which work best for him.

God has answered my prayer in the form of a disabled son.

                       

God, guide me to the path that leads to the highest and greatest form of love. This is my prayer.

                                          


It's all slowly making sense now.  Pieces are coming into place and I can see how events of the past have come to shape the reality of my present life.  I am seeing how God has answered all my prayers - especially one that I have repeated  for the past 10 years.  The way in which he has chosen to answer them has taken me aback and left me pondering more of His mysterious ways.  The manner in which my prayers have been answered is not at all what I had expected,  but then again, I just put out my wish to the universe without specifiying the details of how God would fulfill and manifest it in my life.  But first, let me go back in time to some ancestral history to get a fuller picture of how I got to where I am today.

My paternal grandmother had 8 children, I believe, most of who died during the Korean War in their teen years.  Only three of her children survived into adulthood: my father, my aunt (his older sister) and my uncle (his younger brother).  My paternal grandfather was a farmer and a raging alcoholic, an addiction he passed on to my father.  His mother, my great great grandmother, was known to have a ballistic temper and would fly off the handle quite easily.  My father inherited her temper but I am suspicious as to whether they both suffered a mental condition of some type such as a mood disorder.  My father's childhood was lived in the context of the end of the Korean War where poverty made people mean and preoccupied with  getting their own ahead in life.  My father lost his father at an early age (cirrhosis of the liver, most likely)  and was sent to live with his uncle as a photography apprentice by his mother as she was unable to support all her children.  Growinbg up, he never fully experienced unconditional love and was perhaps even abused by his uncle's wife who resented him living in her household.  He watched as his uncle lavished praise, gifts, the best they had to their only son while treating my dad more like a servant than an apprentice.  This experience had a deep impact on his psyche and growing up without love shaped him into a person who was not capable of either giving or receiving authentic love from\to others as well as to himself.  His life lead to self abuse, alcoholism, verbal abuse of his children and physical\ verbal abuse of his wife which eventually lead to divorce.

Growing up, I had alot of resentment towards my father. I still do.  I did not understand his self destructive ways. Now, I understand what lead him to be who he was.  Ever since this epiphany, I have prayed for over 10 years that God would guide me to the path of greatest love in its highest form since I knew where the path lack of love lead.

God has answered my prayer in the form of a disabled son.

...to be continue.

Luki's new milestones since turning two.

Lucas turns 2!

How time flies! Lucas has turned 2 years old.  It seems like yesterday I was holding him in my arms and spellbound by his little body on the day of his birth.  Time waits for no one, that's for sure!  We spent his birthday at Redondo Beach with Gabe's parents and ordered far too much seafood at the korean restaurant on the pier.  Sashimi, steamed crabs (one for each person, what a treat!), seafood platter, Korean style clam soup...definitely would have set us back a bit, but Luki's grandma insisted on paying for lunch.  Unfortunately, the total came out to be more than what she had brought-even she was surprised at how expensive everything turned out.  Is it just me or is the food price going up these days?  We had a nice lunch and Luki got to wade in the ocean water with his feet for the first time.  He was taken aback by the coldness of the water and stood there like an ostrich with one leg up so as not to get his foot wet.  Of course, we had to hold him as he is still not free standing.  He also seemed to like putting his hand through the sand.  We decided to come to the beach on another day in summer and have a proper picnic with a tent, canopy, chairs and home packed food and spend the day at the beach for Luki to enjoy. I am really looking forward to it although Gabe is worried it might be too much work for him to lug things around and set things up. 

On his second year well baby check up, Luki's pediatrician was so surprised to see the positive transformation in him in just six months before when she last saw him.  He seemed to have better control of his muscles, "verbalized" more (with ohms and awws) and seemed more aware of his surroundings.  I, too, feel he has come a long way in just six months.  I am not sure what exactly has made the difference; was it the supplements, physical/occupational therapy, infant stimulation, baby gyms or, all of the above.  I think what is also overlooked in his improvement is the free time I give him to explore his toys and surroundings on his own term.  He manages to stand and walk around the coffee table several times during the day, hold on to furniture and the sliding glass door to stand and walk sideways.  Rather than me always coaching him to do things, I think this approach has been very successful.  The other day, I called out his name and he stopped what he was doing and made eye contact with me as if to say, "Why did you call my name, mommy?  What other adventures are we going to have today?"  When I verbalized my surprise and happiness at his gesture, he smiled, looked away and continued playing.  Also, when I turned on nursery songs, I noticed he started to clap with good eye contact as if to say, "Mommy, we need to clap our hands when the music comes on."  I couldn't believe what I was seeing!  Could I just be imagining  these things? Wishful thinking on my part? Could be, since these occurances are not always consistent.  Luki needs to be given way more credit for his awareness than I have been giving him although he not where I would like him to be.  He IS very aware of everything around him and is very sensitive to other people (especially my) feelings.  Once, when I cried in front of him, he started to cry with me.  When I laugh, he laughs with me, too!

During his Well Baby checkup, he started to cry and fuss when I put him in his baby gown and laid him on the examining cot.  It almost felt as if he remembered the many times he got poked for blood draws and thought he might get poked again.  It's hard to tell for sure and I am only going by my intuition since Luki can't talk, His latest hobby is playing with my hair (pulling it) as well as his own.

Luki still hasn't started his ABA, yet. But, he has met an incredible physical therapist who really seem to connect with him.  Unlike other times during his PT sessions when he fusses and cries after a few minutes, he has not cried once with Ms. Erica.  My prayer now is that he will meet an equally connected therapist for his ABA sessions. 

Eureka! My crabbiness has nothing to do with any situation or person but everything to do with how I feel about myself.

     So, lately I found myself feeling a bit down and crabby. I;ve been trying to figure out why I am feeling this way.  Given, Luki has recently been diagnosed with autism might have something to do with it.  But, I know he is a very special and intelligent soul in a somewhat different body from other people and  I am at peace with his condition - so long as he doesn't develop seizures and have other health issues.  This is just how he has decided to manifest into this world in this particular lifetime and what an honor it is that I have been chosen to be the mother to such a brilliant soul.  I thought maybe it had something to do with Gabe as I have been feeling short with him on trivial things.  After reflecting a bit, and perhaps with some inspiration from Spirit, I had the understanding that this negative feeling which I have been projecting outward has nothing to do with something outside of myself.  In fact, it is a negative feeling I have toward myself which gets displaced onto things/people outside of myself.  This understanding must have come from above or, I am getting better at understanding myself and how I tick, or both.   Perhaps, discernment like this comes with maturity and age - I am getting old (er).  After having realized this, some of the negativity dissolved away.  It was a pity party for myself and a bit of low self esteem (which may explain why I have been  shopping for clothes so much lately) which my mind was trying to blame on other people and situations. After this realization, I found peace again with my husband and my situation with Luki.  Living in this physical world will always give me  low grade anxiety even with all the faith and trust I have developed over the years for God.  The three dimensional physical plane is not an easy classroom.
Now, the dilemma remains: how do I find more self esteem and peace with myself?  Is it possible to generate that from within or does it need to be given by someone (force) outside of myself?  I fret that I will be treated less than by other people because of my son's condition.  I worry I will not be able to relate to normal people if our situation  make us live a very differnent lifestyle.  I wish I had all the self confidence and "I don't give a crap about what other people think" attitude.  But, I know me.  I worry ALOT about what other people think about me.  I always felt like an outsider my whole life and have tried to blend in with whatever group I am with and when that was not possible, it always hurt.  We all want acceptance and inclusion, isn't this normal? Don't we all feel this way?
What is the lesson in this situation?  Find contentment with my authentic self and don't worry too much about being accepted or being a people pleaser. This is a hard lesson for me and I know my son came into being to help me master it.

I spoke with Michelle Whitedove again on a radioshow.  She just reiterated how special Lucas is and that I am worrying way too much.  She suggested I send him to Montessori and help him with vissual and hand coordinated activities.  She said he was going to surprise me and that he was an evolved being here to share unconditional love.  I love him so much and am so grateful to him.







;

ABA, Gargus and Research Ideas.

Yesterday, Luki got his first ABA evaluation.  It was pretty lengthy and comprehensive and he has another one on Wednesday.  It was so sad to answer "no" to so many of her questions.  "Does he feed himself? Does he play peekaboo? Does he point to things? Does he say mama or dada? Does he acknowledge his name?" No, no no and no.  To me, Luki is perfect, but after having answered no to so many of these questions, it just reminded me of how very different he is from regular babies.  I worry that the ABA program would be too harsh for him or that it would give him OCD.  But, I know at this time, this is the best for him.  He gets very frustrated and stressed when he is made to do things and I hope the program does not stress him out too much.

Last Wednesday, I also had my first meeting with Dr. Gargus and G. Calvert to discuss future clinical trials for the IDIC 15 population in the Alliance's registry.  He stated that he is interested in looking into a mitochondrial connection to autism, calcium channelopathy and plans to purchase sophisticated EEG machines and conduct sleep studies - all very relevant to Luki's condition.  When I brought up my concern about a possible lipid metabolism problem, he stated that his group is working on a lipid molecule from marajuana that seem to reduce autistic behavior.  I am looking forward to more research and results for testing of this molecule - eicannocannibus?  can't remember the exact name. Although the IDIC 15 clinic was just launched at UCLA, Dr. Gargus said UCLA has a much smaller autism research and treatment center compared to UCI and it caters to wealthy families that may not even need insurance to pay for services.  This was one concern I had about taking Luki to the new IDIC 15 clinic.  How much would it cost us as it would have to be out of pocket since UCLA is out of Kaiser's hub of providers. 

We invited Dr. Gargus to the annual scientific conference at UC Davis Mind Center and he hooked us up to Dr. Kimonis who is heading up the Prader Willi study at UCI.  I hope to meet or speak with her in the near future. 

I question if I am doing everything I can for Luki and wonder if he knows how much I love him.  I wish I could have him just say one word for me now - and an "I love you" would take me over the moon.  I wish he can tell me what bothers him, I would like to know so badly. 

Last week, I also suggested a research idea to the scientific advisory board which involved a possible inhibitor study of UBE3a gene product.  I suggested various ubiquitin ligase inhibitors be studied and assayed on  IDIC 15 brain cell lines, then given to the knock in mice and measure any improvement in autistic behavior.  I was told by Dr. Chamberlain that there are three kinds of ubiquitin ligase inhibitors and the one we are looking for (with a HECT domain) has not been discovered, yet.  This inhibitor has become my holy grail.  In the meantime, it doesn't stop us from trying other experiements on the nature of UBE3a.  Perhaps the ideas I am about to share have been tried and studies already, but if not, it is worth taking a look at.

First, I am curious to know whether the UBE3a gene products in IDIC 15 brain is stucturally and functionally the same as normal UBE3a.  Dr. Reiter's finding that the copy number dosage does not necessarily correlate with the severity of the symptoms suggests that there may possibly be a defective translational product in the presence of the extra UBE3a genes.  Could it be that the translational product of UBE3a undergoes a protein misfolding in the presence of the extra genes such that they do not perform at the same level as the UBE3a from those with a normal copy number?  Do the  subunits dimerize? trimerize? or just look and function differentlyand less efficiently than the normal enzyme?

I am wondering if it is possible to isolate the ubiquitin ligase form the IDIC 15 brain cell line (without alterring their endogenous structure in the process), and then run it on a gel to separate by size and charge and compare it to ubiquitin ligase from a normal copy numbered brain cell and see whether they actually do have the same characteristics.  Could we get even further confirmation through x ray crystallography to see the structure? 

If the gel study shows that the IDIC 15 E3 ligase indeed is different from the normal, what would be the effect of giving these cells more of the E3 ligase that functions properly?  I wonder if such a study is being done for the Angelman Syndrome. 

On the other hand, if the gel study shows that it indeed is the same as the E3 ligase in normal people, then rather than waiting for the discovery of a HECT domain UBE3a inhibitor, why not use the endogenous substrate for the enzyme, which I believe is an ARC protein. What would be the efffect of giving more of the ARC protein?  Could the ARC protein be modified so that it somehow irreversably binds to the UBE3a ligase (maybe form a strong covalent bond somewhere on the enzyme) so that the enzyme can no longer uptake more substrates thus rendering it inactive?

These are some crazy ideas I think of in the middle of the night and I hope to present them to the science advisory board.  Hopefully, it doesn't sound too far fetched and I don't offend anyone's scientific sensibilities.  If nothing else, they can get a good laugh at it.