Our first annual IFSP meeting with Candy Sandoval.

Yesterday, our little family had our first annual IFSP meeting with our Regional Center case manager, Candy Sandoval.  We reviewed our goals for the coming year, educational concerns and the possibility of enrolling Luki in a Mommy and Me class for disabled children.  I was happy to learn that Luki has met two of the goals we planned out last year (holding his sippy cup independantly and eating finger foods).   When we planned out these goals last year, I have to admit I wasn't sure Luki would ever meet them.  I am so happy he has and surprised at how gradual was the process of him meeting these milestones. Our next goals are for him to walk independantly, use utensils for eating and be able to say mommy and daddy. 

The day programs offered to disabled toddlers are either a drop off or mommy & me sessions.  The drop off program is closest to our home but I am so hesitant to leave him alone as he still can't walk or talk.  The mommy and me program is offered in the campus of Cal State LA- a bit of a drive but it may be worth itt.  This also means wee have to reschedule all our therapy sessions - a feat hopefully which won't be too painful.

Candy also told us that with Luki's autism diagnosis, we may be able too stay with Regional Center long after he turns three years old when the school districts take over his care. I would like to ask Candy if we can somehow have hhim in the Rosemead school district - I heard such bad things about Montebello.  She also said we may be eligible for a medicaid waiver as a seondary insurance along with what we have right now, which is Kiaser.  This is such great news as it may mean we can rest assured in being able to take him to specialists outside of Kaiser network such as the Dup15 clinic at UCLA without having to worry about breaking bank.  It may also mean we can again take him to naturopathic doctors, too.

Now,we have to look forward to a meeting witth the school district (Montebello) in February , starting his mommy and me classes at Cal State LA and continuing all his therapies (ABA, OT, PT, ST, infant stim.)  These days Luki keeps busy in his splash pool.

Or, he is busy doing laps at the pool with daddy.

Update: during Luki's last ABM session, he walks on his hands! He has never done that before and the therapist said since walking on his feet and on his hand are next to each other in the brain,it will  translate   to him being better able to walk on h is feet soon.  I can't wait!


For now, so grateful Luki eats,poops, sleeps and plays well and is without seizures!  God willing, he will never have them!

Status post Anat Baniel 3 day intensive therapy sessions.

 

 

 

It has been four days since Lucas has completed his intensive 3 day therapy sessions with Sonia Aragon, a certified Anat Baniel method practitioner (above is a picture of Sonia at her studio).  I wasn't sure what outcome to expect-would he start to walk? talk?  It really is putting a lot of faith and expectations on a method to give such miraculous results after just three days, but followers of the method said "miraculous" results would be found after just a few treatments.  Well, I am not sure if what I have noticed in Lucas these few days are "miraculous", but there definitely does seem to be a shift in him for the better in the areas of attention and movement. 

 

After the first day of therapy, Luki took a three hour nap!  He has not taken a three hour nap since his infancy.  The therapy involved very gentle touch and he was not required to do any strenuous, active movements so physical exhaustion doesn't seem to be the reason for his tiredness.  I thought that maybe the touch and massage relaxed him so much that he was lulled into sleeping for so long but he didn't fall asleep until a good 3 to 4 hours after the session.  He did take a quick nap in the car on our way home.  According to Sonia, it is very common for children to get very tired and hungry due to the brain processing so much neuromuscular information.  Millions of cell to cell synaptic connections are made and the nap may help for the brain to process all the information.  I remember in college that I would get very hungry and tired when I was learning a lot of new information for a challenging course, so I see merit in this rationale.  The second day, Lucas slept for 1 1/2 hours which is common for him when he gets very tired.  The third day, we did one session and decided to use the last session as a follow up in two weeks. 

 

Between the time before our next session, I am monitoring Luki and seeing if there are any new milestones.  Today, during speech therapy class, I did notice a much improved attention and physical strength (see video above).  Luki hoisted himself up on a table and lifted his legs up in the air in a prone position.  This showed that his trunk and torso strength has gotten much better.  He even hoisted himself onto his stroller.  Also, when the therapist and I started to sing his favorite song, Twinkle, Twinkle, his face lit up and he stopped what he was doing to listen.  Once we completed the song, he went back to playing and crawling about.  So, this shows he has recognition of his song and also has anticipation of when the song ends!  I always knew he was registering a lot more of what was going on around him, but today, it was so much more evident and recognizable. He also seems to know that bowls carry food or snack inside.  We gave Luki a Tupperware bowl with different wooden shapes inside and he must have thought the shapes were cookies because he put them to his mouth as if he wanted to eat them!  I was so happy on my way home today after therapy.  I had never seen such progress directly.  It is due to the Baniel therapy, coincidence or the combination of all his therapies which are are really helping him.

 

At home, Luki is much more mobile (video above).  Rather than have him limited to the play area in the living room or his playpen, I have him crawl up the stairs, hallway, kitchen, bathroom and wherever his little heart wants to go.  He has become such a good crawler and his endurance is so much better.  I have him back on creatine which may be helping his muscle tone.  And, he has so much more curiosity of his surroundings. 
 

 This is Luki after his PT session.  He has his spio vest and the AFO braces on.  Also, his new mode of transportation is his baby shopping cart.  We use it for his walking exercises during PT and I give him a ride to the car on it.  So cute!

In concluding, I would say I am very happy to have taken  Luki for the Baniel therapy and I plan to continue more sessions with Sonia in the future.  Perhaps, once or twice a month or what our budget would allow.  If nothing else, Luki likes the sessions and the gentle massages seem to relax him.  If he is happy, then I am happier!  :)

 

Just look how happy Luki is playing in water during his ABA session today with Ms. Zoe. 

And look who is eating noodles now!

 

Moving forward into the unknown.

If living with my son in a remote island away from all the hate, bigotry, bullying and other negative behaviors people exhibit towards one another is a possibility, I seriously would consider it.  As days go by, I notice more and more how Lucas' abilities lag behind other children of his age.  This saddens and frightens me.  When Luki was born, it was my little family against the world.  Our family would be a cocoon against the harshness of the world and we would create a safe haven where we can grow together.  I did not anticipate that we would be so dependant on other people and the services offered by the medical profession and therapists.  I hate being dependent on others and this new reality is really making me feel anxious because I don't feel I have ultimate control of my life and neither does Luki.  I have come across a few people in life who have been genuinely kind hearted and well intentioned; but, mostly, I have found people to be shelfish, callous, shallow and devious.  To think that our lives would be at their mercy makes me so angry and hopeless.
Yesterday, I had a particularly unpleasant encounter with another coworker that makes me so angry and sad and worried about the future.  In the past, I've been able to brush off such situations and move on.  I didn't really care that much; but, for some reason now, with Luki being "special" situations where people are small minded, immature and callous make me so so sad.  Things get magnified in my mind out of proportion to their importance in the greater scheme of things in life and I can't shake it off so easily.  When someone is mean to me or belittles me, it feels as if they are also being mean and belittling to my son and I have to control myself from going AWOL.  How will I manage living in modern day society where push and shove is the every day norm without it feeling like they are hitting a raw nerve? Will this be my new life?  Will I become an oversensitive, hysterical mess where every innuendo is perceived as a threat and insult?  Never mind managing Lucas, how will I manage myself?  Perhaps, consulting a life coach/counselor would help but I'm so short on time and money.

 Just writing this entry is giving me chest pains.....