Feeding Progress Note.

At age 4 1/2, Luki is still not an independent eater.  He can take a spoonful of food into his mouth but cannot initiate scooping food onto a spoon, bring it to his mouth and repeating the process.  He has not made much progress in this area ever since he was 3 years old.  Granted, I may not have been diligent in feeding therapy at every meal time and without an ABA therapist or supervisor nagging me to continue with feeding therapy, it just became quicker and more convenient for me to do the work than wait for him to try on his own.  I take full blame for his lack of progress.  Gabe always takes my lead and he has been of the same mindset. Along with potty training, this area has been the hardest to tackle but most desired.  When we are on a time crunch, it's hard to wait for him to finish eating and I end up finishing the job for him. I was told to not do this and let him go hungry as he may come around, but for some reason, this has been very hard for me to do.  

He also refuses to finish a meal without his videos.  It has become a habit to turn Baby Einstein or other children's videos during mealtime.  Perhaps, turning it off completely and having him focus on eating would help; but, habits are hard to break and without it, he may not sit still long enough to eat.  He still needs to be strapped onto his keekaroo chair otherwise, he is on top of the table.  

Here, Luki is eating apple wedges.  He can put small pieces into his mouth but is still unable to take a bite of a larger wedge and pull the unbitten piece out of his mouth.  He just shoves the whole thing into his mouth.  We are working on this, too.  He has always chewed with his mouth closed.  I don't think his bite is as strong as a typical person.  Sometimes, I worry that he just swallows food half chewed but when I examine his stool, I don't find large pieces of undigested food so maybe it's ok?

He is doing an amazing job with french fries being able to pick one at a time instead of a handful.

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On another note, we purchased the Mac Laren Elite special needs stroller out of pocket near the end of the year.  We had some money left over in our healthcare reimbursement account to be void at the end of the year so we went ahead and purchased the stroller with no help from insurance or MediCal, thank you.  Kaiser flat out refused to provide one and MediCal was taking too long for approval.  We submitted a request with our pediatrician's approval for need but they wanted more "documentation".  What exactly they wanted to know more is beyond me.  Isn't it enough that he has hypotonia, has risk for falls, autism, wanders, anxiety in unfamiliar outdoor areas, etc.. What the hell more do they want to know?  It was easier just to get it on our own and I am so glad we have it.  Luki can no longer stop the wheels with is feet - a problem we have been encountering with his other strollers.  It was money well spent.  

I plan to take apart the old MacLaren Quest and use the canopy and seat liner on the new Elite.  That should save me some money on accessories.  

Mapping Your Family Success Day 4 and 5

On Day 4 of our webinar study, Shane addresses the topic of physical health for all members of the family.  

The 4 questions presented are as follows:

1. What isn't working about my health and my child's health?
By late afternoon, I am usually spent and not up to doing any type of therapies with Luki.  Especially on days that I am working nights, I need the time to readjust to being awake on days.  I can't quit my job working nights.  Luki seems to be pretty healthy.  No signs of seizures.  He is eating, sleeping and pooping well which is a blessing for which I can't be grateful enough!

2. What is the one thing that I want to be better this year for my health?
I want to have more physical stamina and energy to work with Luki one on one.  Ever since we stopped ABA, I have not really focused on working with him.  I am just so tired by the time we have opportunities to do play therapies or icon exchange, potty training, etc...

3.  Why is that important?
It's important that Luki gets training to be more independent whether it be going to the bathroom alone or expressing his wants and needs through some kind of communication.  In the long run, I know it will benefit him.  I keep thinking about the old Helen Keller movie where she was treated like a household pet until her therapist Anne Sullivan came and changed her into a human being.  I feel guilty when I am not working with him more.

4. How do I want to feel once the change is made?  (3 words) 
 Proud
Relieved
Hopeful


Day 5:  Today we address the topic of time management.  The questions are as follows:

1. What is not working about your time in your life?

  Social media has become my lifeline with other special needs parents.  I am learning so much from them, especially other parents of children with my son's condition.  And those times I am not on it, I worry I am missing some valuable piece of information or event I should know about.  Yet, at times I feel I am wasting a lot of time, time I could be spending with Luki on his therapies. I sometimes wonder if I am using social media as an escape because even with the intention of going online for information, I find myself viewing various cat videos for enjoyment.

2. What do you want to be different  about how you handle time in your life?  What do I want time for?

I would like to be more disciplined in how much time I spend online.  I want to better budget my time online.  I would like time for myself to decompress, meditate and space out by going to massages, accupuncture.

3. Why is that important?
I would like some time that does not involve Luki once in a while so I don't go crazy and get burnt out.

4.  How do you want to feel if you have more of what you want?Relaxed, rejuvenated, clear thinking, at peace, content.

5.  What is my action step to have better time management? 
I am going to make a daily schedule of what I want to acheive hour to hour from waking up to going to bed.  I am going to allot time to do therapy with Lucas, at least one hour a day!  No slacking!

"Mapping Your Family Success 2016" with Shane Kulman

My Map for Family Success 2016!

This week I am taking an online one week long parent coaching sessions with Shane Kulman, Shane Kulman, MS SpEd parent coach, Behaviorist and Creative Based Family Educator.  This course is to ""map our family success" that is to say an exercise in thinking up clear and positive intentions for the coming year and to break unhealthy habits of behavior for the goal of peace and enjoyment of parenting. Through her, I am learning that the clearer the intention for the family, the clearer the attainment. All behavior is communication and we are learning ways to handle stressful situations and find our own "genius" to the answers by tuning into our own intuitions.

 Shane defines affirmations as statements said as if it's already happening in a positive way such as "I am a confident parent" and replace the negative statements such as "I am doing everything wrong;  nothing is going right which can lead to guilt, bitterness and resentments.  My affirmation this year is that I am a confident and capable mom who is letting go of all fears, anxieties and doubts about having a second child in light of Luki's special needs.  I got this and I can do it. 

G and I have been trying for over two years to have a child with no success after our false pregnancy two years ago.  I wonder if psychologically, we have been hesitant to have another child fearing that less attention would be given to Luki's many special needs.  We have been using various new methods of getting pregnant including the Stork and standing on my head after "artificial insemination" for over an hour.  Gabriel has gone on viagra suffering though aweful headaches as side effects.  I have been drinking PreMama and investing in various fertility-enhancing lubricants.  Nothing has seemed to work.   And of course, working night shift and having Luki sleep with us aren't helping, either.

Last Monday, after a lead from a new coworker who is also trying to conceive, we have both signed up for accupunture and chinese herbs to boost our fertility at a wellness center in Walnut.  We were both poked and prodded for 30 minutes and Gabriel received a prescription for herbs to be diluted and drunk twice a day.  I have not received the herbs, yet.  I am already very regular in my periods and don't feel I have much problems in this area.  Gabe took a sperm count test and it was fine.  The accupunturist suggested he schedule a test to see the strength of sperm motility and get back to him. 

After the first session of accupunture and a day of herbs, Gabe told me his right testicle hurts although he was poked nowhere near that area.  Not sure if this is a good sign or not.  I am not feeling any difference, yet.  Tomorrow, I am headed for my second session. Who knows, I may come home in the mood...lol, we shall see.  

This Experience is What You Believe It is.

As I finish the last episode of the final season of Getting On,  I am intrigued by the last few words said by one doctor  as she and nurse Dawn are gurneyed into the operating room for a kidney transplant surgery.  She states, "In this world, there is no justice but there is mercy because that's what we can give to each other".  War criminals peacefully die in their beds while innocents violently and tragically die in the  millions.  Does karma really exist or is everything just happening with no rhyme or reason because God delights in ALL experiences and there is no good or bad in His mind.  In the words of Venus Andrecht, "God is always happy.  God is always the question and God is always the answer." I can hold all people in love with no judgment if God is everything and everyone. There goes God experiencing itself as a homeless drug addict; there goes God experiencing itself as a prostitute; God experiencing itself as a cognitively delayed nonverbal child; God experiencing itself as a humanitarian; God experiencing itself as a saintly nun; God experiencing itself as a racist bigot, God experiencing itself as an enlightened teacher here to save humanity and it is all for His glory.....

If this be the case, the dilemma I have is is such a God worth loving and worshipping?

There are so many injustices that can happen in one's life.   One's child can be born with a severe disability, get cancer, get hit by a car and be deemed permanently disabled in the prime of life, go into financial crisis and on and on.  Unlike the laws of karma, these tragedies don't just happen to bad people who deserve punishment; no, very often they happen to anybody.  Where is God's justice?  Where is man's justice when we see criminals in the upper eschelons of society run free after creating financial crisis or allowing for the contamination of food and water for fiscal bugeting (Fint's lead in the water supply comes to mind here).

A child born with a disability does not have to be a tragedy for the family if they are shown compassionate mercy by the community. A family living in financial crisis does not have to suffer if  people decide to carry each other and really become each other's "keeper". And, if one can 't help another, at least don't make it more difficult. This is the wisdom of the spiritual realms but as we witness so much fear and hatred, the beings in the spiritual realms must see humanity as primitive beings even as we laud ourselves to be evolved.

To live is Christ and encountering hardships is  perhaps one reason why we have all incarnated into the world. But, interpretations of our experiences can make all the difference in how we manage our lives.  A mother of a child with a cognitive disability who smears feces around the house, stays awake at night and has violent meltdowns in public bemoans the unfairness and curses her tragic fate in life.  Another parent of a similar child only praises what a gift she has been given for she is able to truly experience her ability to love unconditionally and sees her child as a teacher to work on her spiritual virtues of patience, acceptance and tolerance.  The experience we go through is what we believe it is. Who is to argue otherwise? So, let's believe it a good one! I hope I can always return to see the beauty in my situation even when occasionally I lapse into moments of self pity.

"We are the authors of our lives. We write our own daring endings.  We craft love from heartbreak, compassion from shame, grace from disappointment, courage from failure. Showing up is our power. Story is our way home; truth is our song; we are the brave and brokenhearted, we are rising strong."  

Life Manifesto by Brene Brown 

A New Experience for a New Year.

Yesterday, Gabe's former coworkers from Arthur Anderson had a small potluck get together at a home in Temple City and being the potluck loving queen that I am, I prepared Korean short ribs in the crock pot and made our way over to the house with Luki in tow.  Every so often, the close knit group of former coworkers, turned friends, get together at someone's house or meet at a local restaurant to reminisce (gossip) about people they used to work with and catch up on what everyone is doing career-wise at present. Most of them have even attended my wedding.  I have accompanied Gabriel to these events with pleasure in the past but this year, I went reluctantly and with some hesitation.   The last time they met was about two years ago at a Thai restaurant in Pasadena for a one year birthday celebration for the daughter of one of its members.  It was hard to believe the little girl is already three years old now! Luki was just 2 years old at the time and now he is a much more active 4 year old.

The event took place at a modest-sized single family home with a small backyard.  With about 15 people in it, it felt more cramped than it actually may have been.  Luki had just overcome his  one week long meltdown phase and was smiling and calm (thank the heavens!); otherwise, I would have cancelled going.  Yesterday was his last day of a long three week winter vacation and for about a week, he must have been ill with something or the other because he was clingy, whiny and crying accompanied by his high pitch screams which usually manifests when he ill or has not gotten his way.  One week at home with a nonverbal screaming child definitely added more gray hairs to both mine and Gabriel's hair!  I have figured out that his baseline personality is of a calm, mellow and sweet disposition and when he gets into those fits, I know there is something definitely wrong - I just don't know what the heck it could be!  He does not have a psychological issue warranting medications which many other IDIC parents claim is the root cause of their children's anxiety and aggression.  Perhaps, for their children, that is the case, but for Luki, it definitely is not; at least, for now.  Who knows what puberty, adolescence, and more awareness of his difference will lead to in terms of psychological well being in the future.  I pray above all else (except maybe for never having seizures) for his mental happiness and well being. Yesterday's gathering, for the first time, opened my eyes to what may be in store for us in the future and I had to brace myself for a possible reality.

It was a jovial atmosphere with everyone in high spirits, happy to see each other after so many years. The air smelled so delicious of the huge pot of hot beef broth to be used in a Vietnamese noodle dish very similar to pho but with balls of pork and other exotic spices.  As for kids, there were Luki, three elementary aged boys and a three year old girl. Luki seemed to be taking in the whole scenery and his eyes sparkled with curiosity at this new environment, the sounds, smell and people in it.  He was definitely in one of his better moods and it seems more apparent as he ages, that he loves being around people and children who are talking, happy and laughing.  At first, he was very quiet but as he warmed up to the place, he went exploring all the rooms and ran back and forth as he tends to do when he is happy. Someone commented that he is definitely not of the shy type. I agree, he jumps right in to things (and people), literally.

 He ate a little food and everything was well until I noticed everyone's loud chatter descend into an eerie silence and all I could hear was Luki's characteristic humming.  Although nobody was staring at Luki directly, it felt as if everyone just stopped in their tracks and focused in on the unusual sounds Luki was making and was judging him, or at least trying to make sense of him.  Gabriel had not revealed to anyone that Luki has a chromosomal condition, is nonverbal and may have autism.  It was as if they were all discovering this  at that moment when time just screeched to a halt.  Nobody approached me or asked me any questions about why he was making the strange sounds.  Everyone just made mental notes to discuss this later in the absence of Gabe and my presence and they just picked right back up with their conversation. Perhaps, they felt it rude to mention anything or ask any questions.  I would have preferred they ask me anything about him instead of just ignoring it and moving on. I hate to admit it, but for a moment I felt embarrassed and wished Luki would stop making those sounds but then felt shameful for what I was thinking.  In an atmosphere of gossip about past coworkers and their weird behaviors, I wondered what they would be talking about Luki after we left.  Had the tone of conversation not been what it was, perhaps I wouldn't have felt so ashamed.

This is the first time I have ever experienced such a feeling and I wonder if this a harbinger of things to come?  Socially awkward moments and perhaps shame and embarrassment for behavior I should be proud of (he is trying to talk with those sounds!)?  Would it mean that we cut social ties (not that there are many) with people who are clueless about our journey? Will we be left isolated and alone? Will people who don't like us use his condition as a tool to ridicule and shame?  How will I react? When Luki was younger, it was easier to dismiss his differences because normal babies were just as underdeveloped as he.  The differences are becoming more distinct as he grows older.

There is an aspect of my inner being not quite explored and developed simply because there was no need to delve into that part of myself.  These uncomfortable events are chances for me to discover another layer of who I am and I should be thankful to my beautiful son for the opportunity. I pray I don't fail him.

A while back, our pastor asked us what the church community could do to support families affected by disability.  I wasn't exactly sure what they could do for us but yesterday's experience gave me a clear answer to this question.  What could the church community give us? This isn't a situation money can solve. A cure for the condition would be the best answer but something they can't offer.  The only thing that would truly help us out is a greater awareness and acceptance of people living with a disability - notably a cognitive disability.  It makes a world of difference to be  around people who accept us instead of seeing us as being weird, strange and less than.  It's horrible to admit, but I am somewhat relieved that there is more awareness of autism in the public even if acceptance may still be lacking.  I am not happy that so many more children are being affected by it, but somehow, our family is benefiting from the increased awareness. A few weeks ago at work, we had a confused elderly patient who was kicking and screaming.  A family member of another patient asked one of the nurses if it was  "one of those retarded kids" making all the commotion. I felt a kick in the gut after hearing that.
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On another note, El Nino finally hit us and Mt. Baldy received two feet of snow so we headed back up the mountain and enjoyed the beautiful winter scenery.  Luki loved it, especially the ski lift, so much so that he even fell asleep on the way down despite the chilly air.  Gloves are a problem.  For some reason, they don't stay on his hands! I wonder if other IDIC kids have this problem....
These are memories I take with me into eternity.

Homeschool program in Arcadia.  http://www.methodschools.org/arcadia