"And So It Goes and It Goes"

My latest find..anthem for autism :

http://m.youtube.com/watch?v=s1zZt4jHvnk

http://m.youtube.com/watch?v=1hiQYurSJCQ

http://www.faith.com/video/A-Special-Needs-Mother-Celebrates-Her-Childs-Life/http://www.faith.com/video/A-Special-Needs-Mother-Celebrates-Her-Childs-Life/

The Universe is conspiring to help me.

ndependent
Options, Inc.

Providing residential, day service, independent
& supported living, and foster & adult family
supports to people with developmental disabilities.

Residential Services

Day Services Programs

http://independentoptions.org/










Today, I was assigned to a patient who is a home health nurse in a community (group) home for adults with intellectual disabilities.  Between giving her medications and assessments, we chatted about the nature of her work and what a community\intermediate care facility for ID (intellectually disabled) adults is like.  She gave me much information about how the homes work and introduced me to her company called Independant Options, Inc (independantoptions.org) that serves the Orange and San Diego counties. This company operates a group of homes with about 6 residents each all over Southern California and holds yearly picnics with over 400 attendees from all group homes.  I would love to attend the next one and observe how happy (or not) the residents seem.  She  also stated that if anyone is interested in opening their own community care home, her company can help acquire funds to refurbish\lease a house through state and federal entities.  The state matches federal funds but with the new healthcare reform, she is uncertain what the future holds.

The need for smaller homes came about with the shut down of a big facility in Pomona which at one point housed approximately 500 residents.  I like the smaller home idea better.  Of course, the quality of care rests completely on how compassionate the caregivers are.  Unfortunately, these positions, according to this nurse, are minimum wage jobs and it is rare to find people who can give saintly care for such low pay. Fore many, the job may be just a paycheck,  a means of making a living.  Each home has an RN during the day and LVNs during the night.   As Luki reaches adulthood, I wonder if he will need to be placed in such "communities" ; or, would it be possible for me to open such a home in my retirement (or sooner).  I would rather have him stay under my roof than far away from my watch where abuse and neglect can go unnoticed or hidden.

 Today, I watched a video of an ABA therapist physically abusing a 3 year old boy during his therapy session at the child's own home! So enraging to watch.  My patient also told me a story of an independant adult autistic man who was being physically abused by his occupational therapist in his own apartment! My blood boils at such stories and makes me more worried and anxious for Luki's future.  In fact, I am seriously even considering home schooling him.

Could it be that many of these verbally challenged children with behavior problems are actually being abused or bullied at school and it is their cry for help or a natural reaction to what they suffer through day in and day out at school when they throw tantrums or exhibit behavioral issues? If so, it is wrong to think the problem lies intrinsically within the child and medicate them with psych meds.  

On another note, synchronicity seems to favor me and I can't help wonder if the universe is conspiring to help me  along my journey as a special needs parent.  Strange, that in the past, I have never had even one patient with anything affiliated with the developmentally disabled population.  After learning of Luki's condition, I have had so many patients (and their family members) who are/was/ is involved in the world of special needs.  How can I forget the former nun who taught developmentally challenged children for more than 2 decades, or the patient whose daughter was a special education attorney; the mother with an autistic child; the grand mother of a teacher who teaches special needs children and today, the home health nurse who works for an adult community care facility (DDN/IDN).  Truely, my plight is being noticed and I don't walk this path alone.

Today, Luki slurped his noodles.  Working those jaw muscles...

Before the eve of 2014

Is it just me or does time fly so much faster as one ages.  How I remember the days of my youth when time seemed so long and dragging.  Now, seems I blink an eye and another year has passed by.  It flies faster too when I am so busy tending to Luki's many therapies and school.  My life in 2013 revolved around Lucas and I wonder what I had been doing before he came along.  Before an energetic 2 year old boy entered our household, decorating for Christmas yielded a nice, manicured living room.  This year, I've noticed that among all his toys and books,  all the decorations just look like clutter. It may be like this for a while and I wonder if I should even bother to decorate and put up the lights next year.  We went to Stat's in Pasadena and purchased some new decorations that hopefully won't make the place look to cluttered.  We shall see what happens next year...

Looking back on 2013, it was an exhausting yet adventurous year for me.  I have been introduced to so many modalities of autism therapy, attended a science seminar at UCI, accompanied Lucas in his mommy and me classes 3 times a week, had a miscarriage at 8 weeks of pregnancy and still managed to work 4 straight 12 hour graveyard shift every other Friday through Monday.  And, I did not get sick once-not even a cold!  Lucas has definitely kept me on my toes and I so relish every single minute with him.  Even when he fusses (usually when he is tired or he wants to play with water), he is just so darn cute that I can't help but smile. He must be furious to see me smile while he is in agony!  Once I start thinking about the future, I get very afraid and anxious and I try not to think too much beyond today, or the moment I have him now.  My favorite time of the day is when I put him to nap and instead of putting him down in his playpen, I  hold him in my arms and just look into his peaceful sleeping face and kiss his cheeks and tiny little lips and nose.  He truly is gorgeous in every way and I still question God, "Is he truly mine?"  It feels as if time stands still or doesn't even exist at that moment and I am so at peace with him and love being his mom. 

For Christmas, Lucas got a water table from me.  Now, his favorite thing in the world (water) has become more accessible and he doesn't have to cry so much when the faucet is turned off after washing his hands.  Gabriel bought him his first tricycle (radio flyer).  Velcro needs to be used for his foot to pedal as he still doesn't get the concept of riding.  In time, I think this will come to him just as so many other milestones were reached this year.  Today, I witnessed him standing up from a squatting position without holding onto anything!  Gabe said he noticed this a week ago.  Still wobbly on the walking but my how he has picked up speed!  Today, as I went to throw away his soiled diaper and wash my hands,  he walked (ran) for the stairs leading to the garage and fell the whole flight of stairs before I could get to him.   It was such a traumatic experience for me and I am glad he was not hurt in any way - just a small bruise on his forehead. We have hence put up a gate. Hopefully, he will remember this event and not dare to go near those stairs again! He also fell off his crib once but still tries to climb out.  Here he is in action at the mall:

During the holiday, I saw a painting by a Swedish artist from 1515 depicting the nativity scene with a child and man who seem to show the characteristic features of Down Syndrome.  I thought how wonderful it was that even back in 1515, people recognized these special people to be perhaps closer to the angelic realm that human.  I wonder if it is true that people with cognitive disabilities indeed have more advanced souls than the average person.  Here is the link to the painting. 

http://www.metmuseum.org/collections/search-the-collections/436781


On that peaceful holy scene, I sign off for this year and work on some mojos to bring luck, prosperity and joy for 2014!

Circle Time and Water Play!

 Lucas continues to enjoy his time at the Mommy and Me classes three times a week through the Centro de Ninos and Padres. His favorite activity is circle time when everyone sings together.  He jumps up and down and has the biggest grin on his face.  He also loves dance time when he gets to shake shake shake his bootie! He is also very aware of the classroom setup now and will make a bee line for the kitchen sink to play with water.  When I pull him away, he throws a cute little tantrum.  It is soo cute when he throws his tantrums.  He must get so frustrated with me as I laugh and smile while he is in misery but I can't help it, it is the cutest thing I have every seen.

Within the past month he has improved so much in his walking.  I have stopped using his walker everywhere we go and have started to have him walk independantly.  He is still wobbly and will fall often, but he is improving in his balance reaction.  I noticed that he pushes himself forward using his trunk instead of his legs. Perhaps, this is due to the fact that he would push himself forward with his trunk when he was using the walker.  This is one reason I stopped using the walker as it seem to be training his brain the wrong way and starting a bad habit of walking improperly.   Now, he is forced to improve his balance and learn to propel forward using his legs more. We also got our second set of DAFO braces for his legs.  I donated the first set to our PT who will use them as demos for other parents who are curious to know how the braces work.  I also donated the Dup15q 2014 calendar to the therapy center and The Centro classroom.  I think it will look great hanging in the classroom where other parents and teachers can become aware of the syndrome and learn how to better aid parents of special needs children from its monthly tip section.  I am kicking myself everyday for not having sent Luki's picture for the calendar...maybe in 2015..

Some therapists say they noticed Luki pointing at objects he wants.  I have not witnessed this myself but noticed that he does use his index finger better at pushing buttons of his toys to turn on the music.  Another noted improvement in fine motor skill, yay!  Speech and communication seem to be the area where he is now lacking so far behind.  Although, he tends to cry more when he doesn't get what he wants -(such as more water play) I hope he learns better ways of communicating such as hand -over-hand, pointing or sign language.  This goals seems so far off in my mind, but then again, his walking seemed nearly impossible just a few months ago, so who knows?

What I want most though is for him to acknowledge me when I call his name and respond to me with at least a "mama" or "mommy".  I so desperately want to hear him say this....

Our new therapy program : Sensory Enrichment Therapy - MendAbility

This week, Lucas has started a new therapy program called Sensory Enrichment Therapy from a company called MendAbility (Mendability.com).  It is a parent run program that uses innovative ways of tactile and sensory stimulation to reduce autistic features.  It was pioneered through clinical trials at UC Irvine by Dr. Leone and a parent group started a company called MendAbility to expand access to other parents.  I pay a monthly fee of $69 for access to activities that changes every two weeks and the website for feedback. This week, Lucas has been smelling various scents (vanilla, lemon, cinnamon) while receiving tactile stimulation (rubbing of back and feet).  The research finding showed that activating the olfactory sense with tactile stimulation activates the brain much more than just tactile or olfactory stimulation alone.  Lucas seems to tolerate it okay, although as a two year old, he will not sit still for a long time to savor a scent and I end up chasing him around with something in front of his nose while at the same time attempting to scratch his back in "8 formation" - a funny sight.  Actually, he initially tried to eat whatever I put in front thinking it was some sort of snack but lately, we noticed him taking nice long whiffs!  Progress.  He also listens to classical music and seems to like it (unlike myself)and he gets spritz of mint ginger spray on his pillow at night while I massage his feet and legs with kukui nut oil.  Lucky little fellow...This method jives very nicely to the brain plasticity theory and the Anat Baniel Method which we had to stop due to it being not affordable for our budget.  There is no therapist fee since I will be doing all the activities with Lucas and the materials in MendAbility all seem easy to get and a parent said she got most of her supplies at the 99 cent store so I am hopeful this will not break bank. I even made a printout of the two weeks activities and shared it with our ABA therapist, Carol, who seems on board in incorporating the activities during ABA sessions.

According to Gabriel, Lucas took 15 laps around his physical therapy room today!  Just two days ago, he was only able to do 4 laps.  It's amazing how fast he is making progress especially in gross motor skills.  By far, PT is the only therapy where he seems to be doing well. Perhaps, it has something to do with making Lucas use his walker everywhere we go and attempting to wean him off his stroller.  He must "walk" to school, mall, therapy sessions.. It takes just three times longer to get to our destination and does a number on my back but it has been worth it to see him progress so much.  Recently, I solicited first year graduate engineering students at Cal State LA to attach a long pole on the walker so I am not stooping so low all the time.  They researched the company that makes the walker and found out that they sell a bar for $120.  When Kaiser said they will not pay for the bar, I went to Home Depot and got two wooden poles and 6 clamps and voila I have saved myself $110 and my back is saved!
(Insert pic)
Our speech therapist said that if Lucas does not meet certain goals laid out by the insurance company, then he will get dropped by the end of the year and Regional Center will have to take over in providing speech therapy. This makes no sense to me.  If a child is not progressing well in a certain area, wouldn't it make sense to continue that service until he does rather than just drop him?  We shall see what happens come 2014 which is only a month and a half away.

All other therapies-OT, ABA, ST seem to be the same to me.  Maybe it's because I don't have a professional eye for discerning the difference but I am wondering if they could be doing more, especially during ABA.  I don't see anything being done that is in line with Pavlov's method of positive reinforcement.  As I see it, there is no "carrot dangling in front of him" as reward.  But then again, he is only two so you can't do too much.

He still has a fascination for water.  The first thing he does now when we get to the classroom at the Centro is make a bee line for the sink and crawls right to it.  He is more aware and sharper than I think I give him credit...Gabriel said he does the same thing at the children's playroom at church.. He knows the sound of running water and will go toward it with great focus. And, as soon as we turn the water off after washing his hands, he throws a little tantrum with his hands flailing up and down while crying.  It is sooo cute to see him throw his tantrum..it's just delicious :).

Lucas likes bubbles, too.

We just keep on keeping on!

On my fortieth birthday, Lucas gave me the best present ever by walking 8 steps unaided during his PT session!  It was wobbly but he knew how to regain his balance when falling seemed eminent.  I really didn't know if this day would ever come but I am so relieved.  Not only in his walking skills, but he is cognitively making so much strides.  I am not sure if this is a natural progression of development or a result of all the therapies and supplements he takes.  In our monthly newsletter from the CBR, was featured a clinician and researcher, Dr. Michael Chez of Sutter Medical Center, who developed a product called Carn-Aware - the only double blind placebo controlled study done on a supplement for the treatment of autism.  I wrote him a  letter and invited him to the science meeting held at the MIND Institute in Davis and to my utter surprise, he said he was interested in attending.  It was too bad I was not there to meet him and learn a bit more about his future research projects related to autism and whether he would be open to including Dup15 kids in his research.  The hand of God seemed to have played a role in me contacting him just before the science conference and him being located in Sacramento, a driving distance to Davis. 

Anyhow, Lucas seems more animated and well... "aware" after starting CarnAware.  The only side effect I noticed was disruption in his sleep at night time.  I had to reduce to dosage from 200 mg capsule to 50 mg per day and will slowly titrate it back up.  I also noticed that his sleep disturbance  is more pronounced on the days he gets his B12 shot (10 units) so I am holding back his CarnAware on the day he receives his B12 shot (which is twice a week).  He is not more verbal but is making great improvement in his walking.  It may have also to do with the fact that I am weaning him off the stroller and "forcing" him to walk more with his little shopping cart. Everyday I try to take him to the mall and have him walk from the car to the play area.  He is catching on and at times hoists himself onto the cart so that he doesn't have to walk, or he will just lay on the ground and start crawling.  As long as he moves, I am happy. We also got a disabled placard for the car which kind of makes me sad but grateful we are able to use it. 

 At times, I notice he stops moving and just kind of sits still as if he is in deep thought or he is trying to figure something out.  Overall, he is a very content and happy little boy with the most beautiful smile and the cutest laughs.  I am so in love with him and I can't wait for the day he tells me, "Mommy, I love you."

Luki rode the Merry Go Round for the first time!

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!