December 30,2014

He loves daddy!

He likes to get tickles from daddy!

This shot melts my heart. 

He still doesn't know how to ride the "schoolbus" He can't push himself on it but likes to push the buttons which make music and sounds. 

I recently won a free home photo session worth $500.00.  Not sure why I didn't pretty myself up for the occasion but Luki came out fab and smiled for most of the pictures.  I made our 2014 Christmas card out of the pictures. 

Luki plays a piano duet with aunty Christine at grandma's house for Christmas.

For the last two days, Lucas has been very fussy, clingy and crying a lot and it is so frustrating to not  know what is going on with him.  He makes a lot of vocal sounds but is still nonverbal.  Usually when he acts this way, I can trouble shoot it with either sleep or food.  Yesterday, he cried for most of the day and was pulling my hair and collar.  I have seen him do this before but it was usually a cry of distress.  This time, I can't pinpoint what the problem is, exactly.  It breaks my heart to see him so and not be able to make it better for him.  Today was a bit better but he is still very whiny.  I think he is teething. Gave him Tylenol and was back to his happy self.

Today, we had our first community outing in ABA,  We had our session at the mall along with the therapist, the supervisor and a trainee.  All four of us were hovering over Luki and he was very fussy for the first half hour perhaps still feeling the pain from teething.  He refused to walk and participate in anything.  Having four people with him seemed redundant.  They were just watching him as I interacted with him.  There really isn't much they can do when the whole session revolved around the goal of having him walk the mall.  We just need to tail him and make sure he doesn't run off.  Somedays, I wonder if ABA is making any difference.  I have recently made it a point that I am the primary therapist and the person Easter Seals send is my assistant.  I don't think the therapists do a good job of initiating therapy. This way, I make sure he is getting the skills training he needs while also allowing for mommy and me time. After a while, Luki held our hands to walk.  He even held his arms up to the therapist to hold hands.  He is used to having his dad and myself hold his hand as we walk. Although nonverbal and not fully oriented to his environment,  Lucas is very into his routine.  He walked into Marie Callendars and walked toward the back exit door and walked across the parking lot to a car that looked like our minivan and stood there as if waiting for us to open the door for him to get in so we can go home.  This is the routine we have every other weekend for breakfast.

On this New Years Eve, after having cooked and eaten yummy chicken piccata, roasted kale, garlic mushrooms and a bit of wine for dinner, I count all my blessings and smile at the beautiful memories indelibly left upon my heart. I am taking all the beautiful pictures throughout the year into eternity and look forward to reviewing my album in heaven.,  Luki is still seizure free, growing taller and more handsome everyday.  Gabriel and I are still gainfully employed, healthy and happy. I am so thankful for God's goodness.

Flip side: Week 2 Questions

Today we will be looking at Numbers 14: 1-4
In Numbers 13 we saw that rumors were starting to spread. How do you think the rumors affected the Israelites response to the report from the spies? 
How do rumors affect our perspective?

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Read Numbers 12:31-33

Notice in verse 31 that some of the spies say "We can't....". Do you ever find yourself saying "Our special needs family can't....", "I can't....." or " My special child can't....."? What causes that hesitation to do certain things that in reality with God's help we could do?

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Week 2 (Tuesday-Part 2)
In Numbers 13:32 we see that 10 of the spies spread a bad report full of exaggerations. Do we as special needs parents fall into that same trap? What is the result when we do? How does that affect those around us?

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Happy Saturday! Raising a child with special needs can be very draining physically, financially, emotionally and spiritually. What are some things you do to help "fill your tank"?

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How do you view your child? Share your thoughts in the comment section 

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Week 2 (Friday)
As we close out week 2 of our Flip-side study on perspective here are some things to consider.

When you look at your life, what is your perspective? Do you see "giants" or "grapes"? Do you tend to look at things as impossible and see the negatives, or do you focus on and remember how big God really is?

Pray and ask God to to bring to mind the times He has been faithful. Write them down as a remembrance of all He has done. Read the list on the dark days when the "giants" seem to want to overtake.

Ask God to reveal areas in your life where you are doing the following and ask Him to help you in those areas.
1. Saying "but" or making excuses to not do what God has called you to do. 2. Saying "I can't" or "my child can't" when God says you can. 3. Spreading or believing bad reports or exaggerating facts to cause chaos. 4. Gossiping

Share in the comment section below a way God has blessed you recently.

How has God helped you face the "giants" in your life?

Flip Side: A 5 week Bible Study for Parents of Special Needs Children.

I suppose my hours and hours of Facebook surfing has not totally been a waste of time as I have found a very useful 5 week bible study for parents of special needs children. Thank God Gabriel increased our data plan from Charter, our cable company and also increased our data on the cell phone.  I have been going over the limit every month! Today is the fourth day of the study and I already have so many good questions to ponder that bring meaning into my life as a special needs parent.  So this is how it work: everyday, a series of questions are presented (on a Facebook group page and via email) to the participants and we are welcome to answer them on the Flip Side Facebook page or just reflect on them for our own eyes.  I have shared a few answers and have found other people's responses helpful in gaining a better perspective in my own situation.  I will share the questions and my answers in this blog as a record of the study.

Week 1 (Tuesday Sept.23, 2014):

1. Have you ever known of two people who experienced almost the same situation but have totally different perspectives on the situation? Why do you think this happens?

2. In looking at your life, are you tempted to have a "pity party"? What are the main things that cause you to want to have a "pity party"?

3. What do you think about this quote from Charles Swindoll? "Life is 10% what happens to me and 90% how I react to it."

My response:

I think some people are better prepared to handle life's difficulties because they have a deeper spiritual maturity and understanding and these are tools that keep them from falling into a hopeless abyss. Granted, some have more support and resources than others, I have seen people handle tragedies with amazing grace and I have others lash out and show the worst in themselves because they are hurt. Joining studies like this is a step I take to develop my spiritual maturity so that I may be buffered from whatever may come. Yes, I have had pity parties usually when I compare my life to those ":others" who seem so much more blessed than me. Or, when I reflect back on all the negative things that have happened to me in the past and wonder, why do I need to carry more ? My yoke is not light. But, I realize that we all suffer in our own way in life - to live is Christ and we all carry our cross.

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WeeK 1 Wed. Sept 24, 2014 - My birthday!

1. If someone asked you to describe your life what would you say? Would you portray your life raising a child with special needs in a positive or negative way?

2. If the world were to describe your life, what kind of words would they use? How do you think God would describe your life?

3. How does the world's perception differ from God's perception?

If you tend to be more on the negative side, start praying and asking God to help you see your life and the situations you face through His eyes and perception.

My response:

1. If God came and told me He will take away Luki's condition today, I will take it in a heartbeat. The negatives of raising a special needs child is the constant dull background pain in my heart that he will never able to fully be independant and exercise free will in how he wants his life to progress. A positive is that he is in my life and I love being in his company. 2. I think the world would describe my life perhaps with some pity.I think God would consider my life with honor and gratitude for helping Him raise a very special soul in this world who has a very special mission and purpose-far more unique but no less important than others. 3. The world sees flashing lights and glittery gold as the end all be all, God sees dirt as an agent to make the blind see. I want to believe that my son is akin to the dirt in Jesus hand that can make the whole world see His Glory

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Week 1 Sept. 25, 2014

What am I thankful for?

I am thankful firstly for the spiritual path I have decided to tread in this life.  It has brought me so much clarity, peace, understanding and joy knowing that I am loved by Love itself, my soul is eternal and this life ain't everything. 

 I am grateful that a loving God has chosen to reveal these truths into my heart and I cherish it with all my heart; It is as essential as the air I breathe.

 Secondly, I am grateful for the love and support of such a wonderful man that is my husband.  I am blessed to walk this path with him and share his child-like simplicity in approaching life.  He reminds me of the happy times of my childhood and makes me feel so young at heart.  

I am grateful for the soul of my son who has chosen a very challenging physical presence on Earth.  I believe God gives free will even before our birth, in heaven, and when God asked for volunteers in heaven for a very special yet challenging mission on Earth of promoting deeper acceptance and unconditional love, my son's soul raised his hand and said,"I will go" while other more timid souls could not honor such a difficult request.  For that, I honor my son's spirit in making the choice for such a life.  Truly, he is a far more advanced soul than as acknowledged in this world.   

I am grateful for the community of like-minded special needs parents  to commiserate, share, cry, laugh, rejoice, grow and learn on this very special journey.  Whether they remember or acknowledge it, just as my son said "yes" to God's request, I believe parents of special needs children also said "yes" to God to be guardians of these souls working out their salvation in the most unique way.  Some parents would say, "I didn't sign up for this!" I believe that their spirit chose it before they came to be - God gives free will but I think there is more free will in heaven than on earth.  

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Week 1 Sept 26, 2014 Friday

1. How can our attitudes affect our perception of the situations we have raising a child with special needs?

2. How is your perception shaped by your environment and the people surrounding you?

3. How do our childhood experiences shape our perceptions as adults?

4. How does your attitude shape the perceptions of those around you?

These questions remind me of a quote: 

"Most people think happiness is about gaining something but it's not, it's all about getting rid of the darkness you accumulate". - Carolyn Crane

Attitude is everything. Attitude can be influenced by biochemical imbalances, temperament, stress level, exposure to constant negativity, I need to be very cautious that these are not off balance for too long. We all need positive guidance and exposure to have a positive attitude.  When I was younger, I didn't  realize this and blindly lived through life absorbing everything around me, be it good or bad, without question. Now, I first analyze how something - be it a situation, a person, an image makes me feel.  If they don't fill be with loving and peaceful thoughts, then I am cautious of accepting and absorbing them into my life. I've come to realize that God gave me emotions as a barometer of how I am faring and rather than hiding, denying and minimizing my feelings, I have learned to listen to them as a God given guide in steering away from harm and negativity.  This was learned later in life and I wish I had discovered this strategy when younger, it would have saved me a lot of heartache and frustration.  

Preschool Starts, Goodbye Summer, Hello Fall.

Lucas walks into his first day of preschool like a big boy.  He was wobbly with the bag pack on but walked much better without it.  He lets me hold his hand and he follows me.  I still send him to school with his stroller. But, he is getting better at walking with holding hands.

Lucas can climb down stairs better now.  At home, he can climb up and down the small staircase from the living room to the dining room - about 8 steps- all by himself.  He can climb up the long staircase but still needs  help coming down.  He holds my hand and the rail. 

Lucas gets impatient with the merry go round.  He says, "forget this, I'm outta here!"  Interesting exit plan.

He used to be scared of the ball blower sound and would freak out.  Now, he can't get enough of this.  He pushes the button by himself to start it.  I sometimes hold him up  and he likes the feel of the breeze on his face and catching the balls that pop up. 

L is much more vocal now.  He makes these sounds all day long.  I think this is a very good precursor to speech and I can't wait for him to start talking soon!  I know it will happen.  

Lucas has broken his glasses 3 times, lost one lens once which I found in the car.  Still hates wearing them, but I am persistent in keeping them on.  

Lucas gives kisses on demand and now puckers up instead of sticking his tongue out.  The best milestone, yet!

A Caregiver who has had Enough.

A few weeks ago, as Luki was enjoying the hot summer sun in the patio, splashing away on his water table, I noticed an angry women walking down the middle of the car lane against traffic towards a young man sitting on the sidewalk waiting for a bus.  She looked like she was in her thirties, a bit heavy set and angry as hell at the man she was approaching.  He was also heavy set and looked like he had either autism or developmental delays.  She was yelling, "I can't believe you are doing this to me.  I chose you over everyone else.  I was always on your side and this is how you thank me?!! "  When she reached the guy, she started punching him with her fist and continued to yell and make a scene.  This was going on right in front of me across the street and I could see  and hear them very clearly since it was a quiet day without much traffic.  The lady noticed me and started yelling at me to mind my own business once she saw that I was observing all of this.  I told her I had every right to look outside my own patio and she should take her anger to a more private place.  I took Luki inside because I didn't want to frighten him with this scene and all the yelling but I continued to watch them from inside.  She continued to kick and punch this guy and when he had enough of her, he punched her back.  I don't blame him because he really held out for a long time and tried to speak calmly to her and when she was not responding rationally, he hit back in self defense.  Blood started splattering on the sidewalk and the lady had a bloody nose and bruised up face.   I opened the sliding door and from the patio yelled out, "stop that right now!"  She seemed very shocked that he hit her back and with "Oh my God, I can't believe you hit me! I can't believe this!" proceeded to walk back toward the direction she came from.  He walked the opposite direction and I saw him sit at a bus stop bench a block away.  I called the police and reported that he was sitting at the bus stop.  Apparently, she walked into the corner Carrow's Restaurant and they had already reported that a bleeding woman walked into the restaurant. Shortly after I made my report, the police came and took the young man.

In situations like this, where a woman is found beaten up and bleeding, the police would most likely find the man at fault.  I regret not stating in my report that it was really the woman who was the aggressor and that he was really trying to defend himself.  I still wonder to this day what happened to that guy and hope that he is OK.  I hope the same for that woman.

Caregiver burnout.  She was either his mother, sister or a guardian who took care of his needs.  Maybe she reached a point where she could not take any more of the stress, disappointment, fear, frustration, anger and a myriad other negative emotions that can come from being a 24/7 caregiver to a person with a disability.  Maybe she doesn't have enough social/financial support to carry the burden alone and just finally snapped that day.  And I wondered, will this kind of thing be in Luki and my future?  If we get strapped for assistance and become weary under stress and fatigue, will such ugliness manifest from within myself?

Having lived with an alcoholic and possibly bipolar father, I have a familiarity with the above scene and empathize with her very well.  I have had to yell, nag, fight for someone to change but in hindsight, I realize it was all wasted energy and as the saying goes in Alcoholics Anonymous, I don't have the power to change a person without their willingness.  With his passing, I thought my days of being a caregiver were over and a new start, a brighter future would be in my path with my own family, that is, until Luki's diagnosis was discovered.  I am clearly realizing that one of my life's purpose is to be a caregiver.  How could I even have chosen nursing as a career.  This can't all be coincidental.  I am convinced that being a caregiver in this lifetime is a contract I made with God before I incarnated onto Earth.  I guess on the bright side, that is one thing less I need to ponder and discover about myself. I have found my mission and purpose in life.  .

"So what Does Hope Look Like These Days?"

During last Sunday's Journeys meeting, the facilitator asked us what hope looked like in the midst of  going through "the valley".  Many families have children with dire medical needs such as uncontrolled seizures, hypotonia, learning delays, autism, etc that place a heavy strain on the family dynamics such as the added physical burden that can lead to emotional/psychological fatigue.  I couldn't think up an answer that seemed "hopeful" at the moment but I pondered this question for the rest of the day and finally came up with an answer that seemed satisfying to me.   Sometimes, I wonder where these answers come from - is it me thinking them up or is it Spirit infusing its loving knowledge for me to take.  The answer I received is that hope rests only with how I react to the situation.  Precious energy can be wasted trying to change what God has appointed upon my family's life.   What I hope for the future is that I will be a good, loving and positive motherly presence in the family. I am inventing what a "motherly presence" is as I go along since I have never had such growing up.
 I can only control my reactions to the whirlwind of events that unfold before me.  I have no control of Luki's medical condition, whether he will ever have seizures or even if he will ever talk.  I can pray for the best, but God has the ultimate hand in the situation.  I can only pray that God reveal to me the deeper meaning -His good will- in the situation and steer my family toward the Light. I can become despondent or I can tune myself to a higher vibration of energy - and for that, I need God and the heavenly realm to lift me up to that state.  I can't get there on my own.  So, that is my hope.  I am hopeful that I have enough spiritual maturity to recognize the importance thought and attitude plays in shaping a future reality..  I also hope to always stay at that level of awareness and that this knowledge will translate into carrying me and my family from the pitfalls of despair to true spiritual wisdom and intimacy with God.  I leave the details of how this would be achieved up to God and the angels who surround and protect my family.

Lucas has Started Summer Preschool

As written out in our IEP, Lucas has 2 hours of summer preschool Monday through Friday.  At first, he cried and fretted and I was so worried to leave him alone';but according to the teacher and the 1:1 case worker, he had a great time.  It's been two weeks now and every time I drop him off, he doesn't seem clingy nor scared to be separated from me.  He just goes right along with his teacher into the classroom.  Actually, wheeled in to the classroom in his stroller - not because he can't walk yet, but because it is hard to guide him to walk in the direction I need as he still does not like to hold hands while walking and seems confused about what is expected of him every time I try to guide him with touch.  I tried the toddler Rifkin walker we used since he was a little over one year old, but his little legs give out and they refuse to walk.  So, to make things easier on all parties, including Lucas, the stroller works best.  I have written our pediatrician about getting a special needs stroller and diaper coverage through our insurance and she has written a prescription for them.  I am still awaiting a call from Kaiser to see if these are included in our benefits.  It would be great if we just  get coverage for the diapers.  Lucas tends to stick his feet on the wheels of his stroller making it stop every so often and this is why I am requesting a special needs stroller.  I hope we are able to get these.  The MacLaren special needs stroller alone costs over $600.

Here are some pictures from his first day at school.

As I remember from the days at Centro, Lucas can't sit in regular chairs so I have the teacher use his beach chair in the classroom.  It seems to stabilize him more.  The occupational therapist at school said that the chair is not helping with trunk support and posture so they ordered a special chair just for him.  I remember these plastic chairs with high sides that also turn  into tables when placed sideways.  He used to slip right out of them but I am hoping he is able to sit in them now that he has better upper body support.  He used to sit in his Rifkin chair which had a center pole between his legs so as not to slip down.

Aside from being a better sitter, Lucas has become quite the climber!  He climbs everything now - the stairs (still on all four), the dining room table, his high chair, onto the car seat,  sofa, etc.. anything he can climb, he will.  He still doesn't seem to have much danger awareness so now I have to watch him like a hawk and be on my toes at all times.  I just look at the sofa forlornly and reminisce the times I used to just lay there and watch T.V.

He is making strides in other areas, too.  One day, I blocked his entry into the bathroom by standing in front of him with my legs open.  He got on his knees and crawled right between  my legs and went straight for the bathroom sink!  Now, that is a thinking brain!  He shows much more control and dexterity when playing with his toys, too.  Even though the toys he has are the same since he was less than one,  he always seem to be discovering different aspects of the the toys every day and so doesn't get bored with them .

In about a week, Lucas will be participating in his first ever clinical trial on Dup15q Syndrome at the UCLA center for autism under Dr. Shefali Jeste-one of the clinicians for the Dup15q Syndrome with collaboration with Dr. Connie Kasari, a behavior intervention specialist. Dr Kasari's research interest include :

• Social-emotional and cognitive development in atypical children
• Randomized control treatment studies of social and communication behavior in children with autism

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 The actual study  is a cognition and communication study that involves a three hour questionnaire.  They are also offering us a 12 one hour sessions of  behavior intervention free of charge for participating in the study.  I think this will be good for Lucas and I am hoping for some improvements in his cognition and awareness after the intervention sessions. The below is information about the study taken from the Dup15q website.

Cognition and Social-Communication Function in Children with Dup15q Syndrome

DUP15Q AND AUTISM

Children with 15q11-q13 duplications are at high risk for neurodevelopmental disabilities, particularly autism spectrum disorder (ASD) and intellectual disability (ID). The UCLA Center for Autism Research and Treatment (CART) is a leading center for autism research and has been named one of the three national Autism Centers of Excellence. Studies in CART have been focused on defining clinical subgroups within the very heterogeneous autism spectrum in order to design targeted interventions that are tailored to the specific needs of each child. 

What is the purpose of the study?

This study combines the clinical expertise in ASD and ID of Dr. Jeste with the intervention expertise of Dr. Kasari to comprehensively and systematically characterize cognitive and social-communication function in children with dup15q syndrome, using standardized behavioral testing, play-based assessments, and EEG. The overarching goal is to determine if there are specific areas of strength or impairment that may serve as targets for behavioral intervention.

The study will involve approximately 3 hours of testing, including parent questionnaires, behavioral evaluations of the child, and a 20-minute high-density EEG session. We will provide each family with written and verbal feedback on the behavioral testing. Furthermore, a subset of children will be entered into a pilot behavioral intervention for social-communication function for a total of 12 one-hour sessions. The intervention will be conducted under the supervision of Dr. Connie Kasari, a leader in intervention research for infants and children with developmental disabilities. 

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My precious Lucas is getting cuter everyday.  He is also getting bigger and heavier, too.  I can't believe how fast he is growing up but I still see the face I saw the first night I held him in my arms. Much to think about in terms of getting him a sibling.  Now that he will be starting preschool, it may get a bit easier for me during the day and perhaps I can also conceive - God be willing, I feel this needs to happen for the sake of the family and especially for Lucas.  The family just doesn't feel complete with just the three of us. During dinner time, I always feels as if there is someone missing.  However, I worry about how the burden of being a "caregiver" would be unfair to the sibling.  Will he feel ashamed of his brother's condition? Will he resent is responsibility?  I don't want to impose too much on him and I pray to God that I will have another child only if he provides for the best opportunities in education and social connections for him/her.  I told God that I would not have a child otherwise.  It would break my heart so. He/she will be loved so much.  I love him/her already.