Extinction Burst - The One Where I Burst Into Tears

Because TLO has yet to speak, she has very unique ways of expressing her emotions. Needless to say, these unique behaviors require special ways of handling too. Yelling nor spanking won't make the cut. One recommended approach is to ignore the behavior (and the child) when she engages in inappropriate behavior. The rationale being that any response is received as an acknowledgement and unintentional reinforcement. This approach works but can be very challenging especially when there is KALAT involved. A modified approach is to "correct" the behavior by guiding the hands (or any body part) doing the nasty thing WITHOUT eye contact.

TLO wanted my phone. I always fail in reinforcing discipline and control but there are days when I get a little hopeful, so I said no. In response to my rejection, she started throwing stuff around. I was working from home that day, rushing to get some reports done. So I just sat there, working, looking to see what she's doing every two minutes or so. I was screaming inside my head. I was cursing and cussing at nobody, a terrifying feeling anchored on that which I don't know how to handle - the unknown. I kept reminding myself not to be mad at TLO but then another voice asks then who should I blame for all these? I will never forget these few minutes when I was controlling rage and tears. I now know that to be hurt and want to hurt but not know how is the most destructive feeling one can ever experience. I thought I was going to die of frustration.

Eventually, TNLO joined the "fun" and started throwing pieces of paper in the air. He said "rain, rain, rain" and then they pretended to be swimming on paper. Both of them did. There were broken things, hair gel, lotion, water and all sorts of liquid all over the bedroom and living room. I could no longer see the floor. Then they started to pick things up and worked together, putting some of the mess in an empty diaper bag. I could no longer see the floor. But I saw love and acceptance. And I knew we survived a big storm. I knew we fought a big fight and we won.

And I know that we will have more of these moments. But for as long as we are together and I keep my mouth shut and my heart open to possibilities, and my husband comes home to pat my shoulder, we will always do. We are unsinkable.

"Special" Feelings From "Finding Dory"

"Finding Dory" captured the ardent wishes of parents for their kids with special needs. For children with ASD To find love and care from strangers. For the little ones with down syndrome, cerebral palsy or ADHD to survive with minimal supervision. For the non-vocal, deaf, or blind, to find their courage, talents and strengths to be able to always come home, safe and whole. We wait and wait and wait for milestones and moments when they unlock their special gifts. And wish to have all the time and access to all possible resources to be able put shells in gaps where their minds and bodies' unique designs make it impossible to swim in the real ocean.

P.S. I think all parents have the same wishes. The level of fear and uncertainties vary though when your kid is a Dory, not a Nemo.

~Sunday, 06/26/2016

Image Source: Disney.com

Multipurpose Nameplate

Marami na akong nagawang nameplate. Para sa sarili ko saka sa mga kapatid ko, para sa mga kaklase na hindi gustong mag-lettering, mag-gupit at mag-dikit, at saka siyempre para kay TLO rin. Pero espesyal itong nameplate na ito. Multipurpose. Sinamahan ko ng pronunciation guide. Naaawa kasi ako sa anak ko. Lampas dalawang linggo na siyang pumapasok, ang tawag pa rin sa kanya ay "KAT-LIN." E hindi naman niya maipagtatanggol ang sarili niyang pangalan, kaya sana gumana ito. Sana rin walang ma-offend. Peace.

Star/Girl/Cub/Boy Scout Uniforms For Sale - Libertad Street, Pasay

Batang Quezon City ako kaya alam kong napakalayo ng Tomas Morato sa Makati. Buti na lang may isang blogger na nag-post ng kung saan nakakabili ng Star Scout uniform malapit sa Makati. Ang idadagdag ko na lang sa directions sa blog post na ito ay ang landmark. Katapat ng St. Mary's Academy ang tindahan. At saka hindi lang scout uniform at accessories ang tinda rito, may mga uniform din, school supplies at saka mga pang-costume sa kung anu-anong okasyon. To summarize, halos lahat ng dadayuhin mo sa Divisoria, nandito na.

D' CLARION GENERAL MERCHANDISING
Address : 2362, P Burgos Street, Pasay, 1300, Metro Manila
Phone Number: 02-831 7279

Maganda pala ang langit kahit medyo nakakabokot ang real set design dito

Pasensya na sa malabong kuha. Tumatakbo sa kalsada ang mga bitbit naming bata.

2 pairs of accessories para kahit itapon sa bintana ni TLO, may matitira pa.

Kids' School Uniform in Libertad Street, Pasay

Libre ang uniporme sa school ni TLO. Kaya lang, kagaya ng developmental delays ng karamihan sa mga estudyante, delayed din ang pagdating ng supplies. Ang sabi ng mga nanay, lola, tiyahin at teachers sa eskuwela, mga August pa raw dumarating ang uniporme. In fairness naman, twice a year ang bigayan, total of 4 sets of uniforms. Puwedeng puwede na talaga sa jackpot, kaya lang dapat daw naka-uniform na si TLO sa Lunes kaya kinarir namin ang paghahanap. Hindi ko alam kung saan ka manggagaling pero sana makatulong sa iyo itong address ng suking tindahan at saka link sa mapa.

A. Dizon Beauty Salon For Men & Women

340 Libertad St., Brgy. 94, Pasay, Metro Manila (MAP here)

Total Gastos: PhP 1,500.00. Ttumawad ako ng Php 20.00
Sando @ PhP 65.00/pc.   X 4 = PhP 260.00
Blouse @ PhP 180.00/pc. X 5 = PhP 900.00
Skirt @ PhP 180.00/pc.  X 2 = PhP 360.00

BTW, kung sa public school nag-aaral ang anak mo, malamang sa malamang ay meron silang Star/Girl/Cub/Boy Scout uniform day (Biyernes). Malapit lang din dito sa A.Dizon sa libertad ang bilihan, abangan sa next post.

Kids Are Home!

I'm writing this on a Sunday. Nag-scheduled posting lang ako kasi nakikinita ko na, baka mahirap nang mag-blog sa mga darating na araw. Dahil... dan dan dan daaaannnn... Uuwi na ang mga bata! Pagkatapos ng isang taon na weekends lang kami magkakasama, dito na ulit sa aming munting bahay kubo titira, kasama namin.

Halos isang taon silang nakatira sa bahay namin sa Tatalon, kasama ang lolo, lola, mga tito, tita at pinsan. Ang sabi kasi ng Developmental Pediatrician ni TLO, malaki ang maitutulong sa kanya ng maraming batang kasama. Totoo naman, nag-iba ang confidence at personality ni TLO mula noong isang barkada sila nila TNLO (The New Little One) at mga pinsan nila. Naaawa lang ako sa malungkot nilang paghihiwalay. Sigurado mami-miss nila ang isa't-isa. Kaya dapat, regular pa rin kaming dadalaw.

Excited na kami ni Sir_Ko. Pero siyempre may kaba rin. Adjustment ulit ito sa pang-araw araw na buhay. Ako, kailangan ko na ulit mag-luto everyday. Si Sir_Ko, mas dadami na ang labahin niya. At marami pang iba. Tataas na ulit ang weekly grocery expenses, ang bayarin sa kuryente at tubig. Siksikan na naman kaming apat sa kama hanggang kaya na nung dalawang bagets na matulog sa kuwarto nila. Ang lahat ng ito ay worth it. Totally, worth it.

Eto na yon, RAKENROL!!!

Paboritong pekatyur ko ito. Kuha ng kapatid ko habang kinakabayo ng magpipinsan yung lolo nila (ulo na lang ni Papa ang kita dito).

PhP 100K for a year of therapy sessions

I have been receiving curious questions (wrapped in love, in the words of Ms. A) about TLO's therapy expenses. Coincidentally, our therapy center just sent our Statement of Account from May 2014 up to the first week of June. To summarize, we paid a little over PhP 100,000 for a year of therapy sessions.

I've added notes below for mothers and everyone who need the same type of developmental intervention for their loved ones.

Notes:

• This is not a complaint. We love our therapy center. We are big fans of TLO's therapist. Their rates are reasonable. We have paid for more expensive therapy sessions from a center here in Makati - no progress in TLO, for double the price.
• These amounts are for three ABA (Applied Behavioral Analysis) therapy sessions per week.
• The spikes in payments due are for when the case manager visits. This is a component of the center's service that we truly appreciate. A case manager is like a therapist's "school principal" checking on the performance of the therapist and TLO's progress against developmental programs
• The amounts exclude the therapist's transportation expense. The center is far from Makati so we opted for Home Based sessions.

TLO's Special Adventure Fundraising - 2nd Update

Today is the first week TLO's Special Adventure Fundraising. We continue to be overwhelmed with the shower of love and blessings. Thank you!

Please know that your support - big or small, tangible or not, now or later - means so much to our little family. May you be blessed, always.

P.S. We heard from some of our friends that Paypal Link is not working. We are not sure if this is a system error...in the meantime, you may also send your donations to the BPI account below:

BPI Express Savings Account# 1739164997
Account Name: Maria Rominda R Baniqued

More About Makati SPED Center

Mga dagdag kaalaman mula kay Teacher Lou. Tungkol ito sa mga sistema at proseso ng eskuwelahan, kasama na rin ang brief expectations setting session (meron pa sa pasukan, sinagot niya lang muna ang mga tanong ko).

1. Children are grouped by their condition to ensure proper care and attention. Napanood mo ba ang FAME? Ganun ko nai-imagine ang set-up. Ang bawat klase ay binubuo base sa specialty ng special needs ng mga bata. May sections for children with autism, down syndrome at intellectual disability (duon sasali si TLO).

2. Hindi basta bastang nilalagay ni Teacher Lou ang mga bata in sections. Inoobserbahan niya muna ng isang linggo bago mag-conclude kung sino ang gustong kasama ng bawat estudyante at kung ano ang tamang mix. Madalas daw kasing mag-walk out ang mga batang ito pag ayaw sa mga nagaganap o mga kasama. Nirerespeto ni Teacher ang choice at preference ng mga estudyante. I love her for that. Very humanist and progressive.

3. Ang mga magulang ng estudyante ay nagiging support group at community. Highly encouraged ang mingling ng estudyate AT parents. May mga binanggit na siyang pangalan ng mga magulang na feeling niya ay makakasundo ko. Dahil raw pare-pareho ang condition ng mga bata sa isang klase, malaking tulong sa parents na malaman kung ano ang mga nangyayari sa buhay ng bata at pamilya isa't isa. Bet ko yan.

4. It takes a minimum of 3 years bago maka-graduate ang mga bata sa SPED. Ibig sabihin, puwede na silang sumali sa regular school. May assessment na ginagawa taun-taon para makita kung handa na ba ang bata. May mga gradudates na sila na nasa regular school na ngayon.

5. Pending Teacher Lou's assessment pa ito pero mukhang Grade 1 na si TLO pagpasok niya sa June 13. Napatili yata ako rito. Sabi ko, Teacher, Grade 1? Hindi pa po siya nakakabasa. Pinakalma naman ako ni Teacher. To simplify, ang grade level ng SPED kids ay three levels lower ng sa regular kids. For example, ang Grade 6 na SPED student ay may faculties ng isang Grade 3 student.

6. Base sa malawak na karanasan ng mga teachers sa Makati SPED Center, ang batang may ID (Intellectual Disability) ay:

• natututong magsalita
• natututong mag-alaga ng sarili
• likas na malambing at hindi marunong mag-sinungaling
• likas na performer
• matinik sa pagbabasa ng tao (hindi raw sila madaling lokohin)
• hindi nakakabasa (pero libre ang umasa)

Ang bawat dagdag kaalaman sa kondisyon ni TLO ay either nakakadurog o nakakabuo ng pag-asa. Iniyakan ko ang posibilidad na hindi makakabasa si TLO. Ang mommy at daddy mahilig magbasa tapos siya hindi makakabasa? Kanino ako puwedeng makipag-away para diyan sa law of nature na yan? Pero hindi ko ito susukuan. Sa lahat ng nilatag na mga posibilidad kay TLO all these years, ito yata ang hindi ko kayang isuko at tanggapin. Idadasal ko ito ng non-stop.


====

Gen. Pio del Pilar Elementary School (SPED Center)

Address: Santuico St., Brgy. Pio Del Pilar, Makati Phone Number: (02) 659 8963

Nemesio I. Yabut Elementary School

Address: Escuela Street, Guadalupe Nuevo, Makati City

Phone Number: (02)882 2058

For more public and private SPED school options, please click here.

Answered Prayer: Free SPED in Makati SPED Center

Gods from all universes must have had a terrible Thursday with all of you making escalations on our behalf. Because --- In 2014, we submitted TLO's enrollment requirements to the Makati SPED Center. They called yesterday. After two years, our little girl is no longer wait listed. She is going to school for zero pesos.

What will happen to the donations we received? Therapy sessions. :)

===

Heneral Pio Del Pillar Elementary School - Makati Special Education Center was a project of the Makati local government. In 2010, the center was turned over to the Department of Education-Makati. The center accepts special needs children at zero cost for the parents. Based on a news article from 2010, these are the center's facilities and service offerings:

• "five-storey building with a jacuzzi and therapy room located at the ground floor and 10 classrooms, which include a computer room, multi-purpose hall, clinic and canteen"
• "Salvacion Calabucal, officer-in-charge of SPED Center, said currently, the Center has 112 enrollees who belong to seven disability groups, which include children with autism, mental retardation (MR), Attention Deficit Hyperactive Disorder (ADHD), hearing impaired and visually impaired."
• "The therapy sessions and classes for children with behavioral problems are being handled by an experienced therapist who applies behavior analysis."
• "Therapy sessions aim to decrease and, if possible, eliminate undesirable behavior for a special child to become more socially acceptable."

I can understand why we were on a wait list for TWO years. SPED is never affordable in the Philippines. In 2014, TLO went to a big private SPED school in Makati. Her tuition fee for one year was P140,000. After this, she also attended a small SPED school (still in Makati) and monthly fee was P14,000. Aside from funds constraints, we did not see any progress in TLO when she attended these schools so we discontinued her SPED in these private schools. Definitely not worth the expensive tuition fees. Earlier this week, I called another big school in Makati to inquire about their SPED program. I was told that max. annual feel is P150,000. Hence the fundraising campaign.

I was extremely thankful and overwhelmed after I talked to Teacher Lou of Makati SPED Center. Only 17 slots were available for TLO's condition and we got accepted! Our little girl is lucky SPED student #17. On the phone and when I dropped by to submit an updated assessment document, I cried buckets of happy tears. With no tuition fee to worry about, we can allocate all our TLO funds (and your donations) to transportation and therapy expenses.

If you are a Makati resident and someone in your family needs SPED, please reach out to the public SPED centers below. Your eligibility depends on your address so please call/visit first to check if you are qualified for enrollment, be patient (keep the "willing to wait" attitude) and continue to pray for continuous reasonable funding for public schools, teachers and therapists. 

Gen. Pio del Pilar Elementary School (SPED Center)

Address: Santuico St., Brgy. Pio Del Pilar, Makati Phone Number: (02) 659 8963

Nemesio I. Yabut Elementary School

Address: Escuela Street, Guadalupe Nuevo, Makati City

Phone Number: (02)882 2058

For more public and private SPED school options, please click here.

TLO's Special Adventure Fundraising

With humility and in faith, hope, and love, I launched a fundraising initiative for TLO last Thursday. Within 24 hours, angels came down from heaven, giving us words of encouragement, moral support, prayers and financial assistance. My faith in the power of kindness was renewed.

The thought of depending on others for anything big or small makes me cringe. I work hard. That was the recurring theme of my younger years: work towards greatness in anything and everything, by myself. This changed in my late 20s. I started seeing the value of having life partners and companions. I trained myself to be interested in people. I taught myself to say "help" and share my joys, fears, pains and dreams with others. I built and nurtured loving relationships with friends, coworkers and family. I looked for mentors.

TLO's fundraising is a cry for help. It is a mother's cry for help. It is my exhaustion from having my hands tied with variables that I cannot control. It is my love for my other child who deserves no less than what we have given his Ate. It is an attempt to thrive in the present, to be whole despite being broken by uncertainties and that cruel thing called "the future."

A number of friends, after seeing my solicitation post, commended my courage. I still don't get that despite the comforting explanations offered. Maybe I will understand what they mean when I am older. Right now, I just know that we will not be able to provide for our children's needs on our own.

We have received this much (in PhP) from the time that I asked for help. This will cover two months of therapy sessions (for transparency, I will be posting copies of receipts when we pay for these sessions). Sincerest thanks to all of you. May your days be filled with with random acts of kindness from strangers and everyone you hold dear.

*First two lines came from a writing gig that The Hubby and I did back in January 2015. Hurray for untouched Paypal payments

---

Please continue to help us send TLO to Occupational and Speech Therapy sessions. 

You also may send your love through: 

BPI Express Savings
Account# 1739164997
Account Name: Maria Rominda R Baniqued

Our Daughter's Future On A Scale (Fundraising for TLO's Special Adventure)

Memories from Friday, May 27 2PM, will be deeply engraved in our hearts and souls. On this date, TLO (The Little One)'s Developmental Pediatrician, with so much hesitation and care, finally called IT. TLO's assessment confirmed that she has, what we have feared for the past seven years: a Cognitive Disability. In the olden days, the clinical term for this condition was Mental Retardation.

Mental retardation is a developmental disability that first appears in children under the age of 18. It is defined as an intellectual functioning level (as measured by standard tests for intelligence quotient) that is well below average and significant limitations in daily living skills (adaptive functioning).
~Medical Dictionary

It took days before I was able to deliver this shocking (although somewhat expected) news to my husband and a few dear friends. I did not have the courage to tell my parents and sisters... they will find out when I post this in Facebook in a while. So here is photo of our little girl's assessment results. The numbers in parentheses represent her "age level" in the different developmental domains. It breaks my heart to say that this is my daughter's future on a scale.



TLO's doctor is still optimistic despite it all. She said that the severity of TLO's condition will need to be assessed in time but NOT for another year. Sometimes, psychologists are too quick to declare "profound intellectual disability" and she said that it looks like "something" is starting in TLO... something that may be worth the wait. Honestly, I don't even know what we are waiting for. I just want TLO to have a happier and comfortable life despite her unique needs.

That being said, we want to take the doctor's recommendations seriously. TLO needs to go to SPED school while going through occupational and speech therapy sessions. With years of juggling funds for TLO's developmental interventions, we have a  rough estimate on overall expense for her education and development for one year. P350,000.00

We don't have that money right now. We can work a hundred times harder than we already do but we will not be able to raise this much in the next 18 months. We won't make it to the end of the month even if we sell our internal organs.The government does not exist in the lives of Filipino parents with special needs kids. So really, we can only count on the kindness of friends, family and strangers.

I don't know how to do solicitations so please forgive the wobbly appeal. If you have extra funds to spare, please donate to TLO's Special Adventure Fund. The link accepts donations by credit card but if you don't have a credit card, you may also send your love through my BPI account (see account details on the right tab).

Our dream is to be able to say that your donations will ensure that TLO will be able to speak or sprint her way towards supposedly "age-appropriate" milestones. But we cannot promise anything. We can only hope against hope that a year will do wonders for our little one. More than monetary assistance, your prayers and well wishes are important. Please see us through this special adventure, wherever you are and in any way that you can.

When our financial capacity improves, we commit to return the favor through Operation Smile Philippines* and/or Autism Society Philippines.

*TLO was born with a cleft palate. She went through two cleft repair surgeries at 6 and 9 months old.

Siya Na Ang Diva

Big day ang araw na ito para sa amin. Assessment ni TLO sa Developmental Pediatrician niya. Malalaman (DAPAT) kung may progreso ba siya kumpara sa huli niyang assessment. Ready kaming lahat, nag-leave pa ang tatay niya sa trabaho. Siyempre present din ang baby brother. Pati si Teacher Regine, ang kanyang loving therapist from Teamworks ay kasama rin namin.

Ang kaso, wala sa mood si Ate. Ayun, nagpa-cute lang nang nagpa-cute kay Dra. Reloza. Susmaryosep. Sabi sa akin ni doktora, "mommy, ayaw niya pong mag-work." Sarap pagalitan ni Ineng, nagpaka-Diva talaga. Pero sabi baka raw kasi dahil masama ang pakiramdam. Kinarir nilang magkapatid ang matinding ubo, all together now.

So ayun, repeater kami. Babalik pa kami sa Biyernes. Yan ang update para sa lahat ng nag-aabang. Meron ding tatlong update pero pending discussion pa ito, marubdob na usapan.

1. Puwede na silang umuwi sa amin (ayan, iiyak na ang lola at lolo niyan). Naawa na si Doc. Sobrang sacrifice na raw iyon (AMEN!)
2. Puwede na ulit bumalik si TLO sa school, pero SPED. Yan ang problema kasi nakadalawang SPED schools na kami sa Makati at hindi naman nakatulong pareho kay TLO. Baka may alam kayo, recommendation naman please.
3.Pinapa-increase ang therapy sessions niya from 3 days to 6 days per week. Ahem. Sinong gustong mag-donate? Parang di kaya ng Math pagkasyahin ang lahat, lahat, lahat.

Hay, TLO. Mahal ka namin. Pero please, magsalita ka na, please?

Panata

Ganiyan ka-severe ang aking problema. Wala pa akong napagtagumpayan na paraan, maski isa. May iniiwasan akong gawin kasi mahirap saka sabi kung titigil ka sa adiksyon, dapat walang ibang dahilan kung hindi ikaw. Baka kapag inalay ko para sa panalangin e gumana.

Panata. Nung bata raw ako ay sobra akong sakitin. Hikaing payatot. Yan ako. Wala na ang signs niyan sa akin. Magaling mamanata ang mga magulang ko. Inalay daw nila ako sa Black Nazarene sa Quiapo. Isinisimba pa nila ako ron na naka-Nazareno costume. Wagi ako ron with my naturally African American curls. Hanggang ngayon pa nga para pa rin akong apo ni Bob Marley.

Kaya sige eto na. Susubukan ko talaga. Para sa mga dalangin ko para sa mga bata.

The One Where I Lost Her

Grocery day. We usually try to take just one kid at a time but I felt like we're ready to have both fatal charming storms with us today (nakakamatay ang likot ng mga ito). Plus mommy guilt. The cantankerous bitch won't zip it. She really wants a complete family tree on grocery days.

The kids love the free cart ride. Their favorite spot is the live fish area. For their entertainment, I'd usually pick stuffed animals and toys. Then off the cart the toys go when it's time to pay.

Their gleeful hedonistic hearts, however, cannot handle the wait time at the checkout counters. So I'd typically take whoever is with us to the toys' area while the Hubby waits in line. Today I had two kids with me, one glued to my hips. Sop was trying some kids' motorbikes while Pot was finding balls to fit in that cute hoop in the corner. Then it happened. Pot just magically disappeared.

I searched all her favorite spots. Crayons and coloring books. Toys and more toys. Appliances area, TVs. I could not find her. Thoughts of kidnapping, pedophilia and white slavery started creeping in. Will I see her in Makati as a filthy beggar with a missing leg? I noticed that my heart stopped beating. I wondered how I am still alive.

After almost 10 minutes of searching and asking grocery staff, one lady confirmed that she saw Pot a few minutes ago. She said that I should probably check the "arcade" area outside. God bless her. Pot was indeed there.

I found her in this spot, with a semi worried look in her face but with eyes still mesmerized by this flashy "Fantasy World" whatever. I would have probably relocated to this world if we lost her for real.

Pot is a special needs child. She is six years old, nonverbal and with the faculties and behaviors of a three year old. How will she find her way home? I am going to make an ID for her this week. And she will need to wear it everytime we're out. And I will never get tired of praying for the kindness of strangers.

Weekend Pasyal

Ito si TLO at ang pinsan niyang si Melaychu noong Sabado. Minions! Palalampasin ba namin ang mga kaibigang dilaw na nonverbal pero minsan ay spanish speaking? Epkersnot! Sine tapos tambay sa food court para sa french fries at Zagu. Ayan, mabuhay ang junk food!







Ito naman si TLO2 noong linggo. Hindi pa namin kaya na sabay silang bitbitin sa gimik kaya hiwalay muna ang lakad. Salamat sa mga palaruan ng Puregold at mukhang natuwa naman itong masungit na bata.

On the 20th hour

Konting kembot na lang ay 20 hours na akong gising. Nakasunog ako ng isang pirasong tortang giniling. Naghugas ako ng isang kawali nang lagpas sampung minuto (puro kuskos lang). At nakaligtaan kong umaapaw ang iniipong tubig to the point na napuno ang plangganita kung saan nakapatong ang lalagyan ng tubig. Muntik na rin akong mahulog sa upuan. Nasusuka ako at gumuguhit ang matapang na acid sa aking lalamunan. Maski si Sopling (The New Little One - TNLE) ay aligagang aligaga. Panay ang tigas ng tiyan ko. Sinubukan ko na ang mag-vent kay Luz Klarita pero di pa rin ako kumakalma. Ayoko namang magdasal kasi hindi pa ako tapos magtampo. Oras na para sa ultimate cure. Kailangan na itong isulat.

Kung magkakilala tayo sa totoong buhay ay alam mo ang tungkol sa sitwasyon ni TLO (The Little One). Alam mo na hindi pa siya nagsasalita kahit malapit na siyang mag-limang taon. Alam mo na panay ang attend niya ng speech at occupational therapy, alam mo na nag-aaral siya sa SPED school at alam mo rin na wala kaming nakikitang progreso. Kung updated ka, siguro alam mo rin na minalas kami sa Developmental Pedia at nagsayang ng halos dalawang taon. Alam mo na rin siguro na bumalik kami sa mahusay na DevPed at ngayon ay binubusisi niya ang lahat ng posibleng dahilan ng Global Delay ni TLO.

Hindi siya bingi.

Walang problema sa pandinig si TLO ayon sa dalawang mamahaling tests na ginawa sa kanya. At dahil cleared siya sa aspetong yan, move on kaming lahat sa next possible cause. Ang utak.

Research: Tuberous Sclerosis

Sa unang session sa isang Pediatric Neurologist, tinanong kami kung may balat na puti si TLO. Positive. Ang tawag daw roon ay ash leaf spot at iyon ay isang posible sintomas ng Tuberous Sclerosis Complex (TSC). Ang TSC ay may malawak na range ng sintomas --- pwedeng normal ang bata, pwedeng madalas mag-seizure, puwedeng may epilepsy, pwedeng may Global Delay at higit sa lahat, pwedeng may mental retardation (kung saan tumitigil ang development ng utak sa isang edad kahit ang may katawan ay tuloy sa "pagtanda"). Puwede ring may mga tumor ang bata sa utak, puso o kidney.

Para malaman kung ang tao ay may TSC, kailangang dumaan sa EEG at iba pang follow-up tests depende sa resulta ng EEG (ex. CT Scan, MRI).

Image Source: http://rhemashope.wordpress.com/2009/11/09/sleep-deprived-eeg/

Sa Sabado ay dadaan na si TLO sa EEG.

Hindi ako handang malaman ang posible naming malaman. At dahil genetic disorder ang TSC, hindi rin ako handang malaman kung pati sa NTLO ay apektado rin.

Bakit ang lakas mag-trip ng Diyos?

I have two dreams

This is for The Little One.

This one is for me.


And this one is for both wishes to come true.
coming soon...


Next post in 40 days! 
Please help me pray for these. Thank you.

For the road!

Image Source: nitrocellulose.net

Pitong araw na akong walang kape! Okay naman ako. Walang withdrawal to date. Inaabangan ko pa. Wala pa rin naman akong nabubulyawan (kasi nagyoyosi pa ako huhuhu).

Hindi ko gawaing makipaglaro sa Diyos. Pero kapag pala desperado ang tao, talagang nagkakaroon ng bonggang audience impact ang OPM (Oh Promise Me). Sakto sa marubdob na depresyon ang naging kwentuhan namin ni Hot Momma I. May nakapagsabi raw sa kanya na minsan, magandang subukan na mag-sakripisyo para makuha ang dinadasal. Umisip daw ng mga mahalagang bagay, bisyo, pagkain, tao, hayop, etc., sa buhay mo. Tapos ialay mo. Wala akong maiaalay na birhen, saka hindi na yata uso iyon. Kaya naisip ko na para makapagsalita na ang aming Little One, hindi na ako iinom ng kape.

E bakit kape? Bakit hindi yosi? Kasi yung yosi naman ay inalay ko para sa isa pang hiling. Saka ko na isusulat kung anong resulta. At saka lahat ng friendly taong pugon sa iyong neighborhood ay sasabihin ito ng may ngiti sa labing maitim - ang kape at yosi ay soulmates. Pag nagsanib yan, ibang level ang sarap. So kapag wala na si kape, mabilis na rin siguro (sana!) ang pagsunod ni yosi sa hukay.

Anyway, successful naman ako sa no coffee lifestyle. For the past seven days. Kaya naisip kong itodo na rin ito. Any colored and flavored drink na unhealthy ay hindi ko na gagalawin. Pero siyempre, matalino si God. Kaya dapat specific din ako sa mga exception.

~ Fresh Juice
~ Gatas (hindi kasama ang chocolate drink kasi masarap yun sa akin)
~ Yogurt Drinks

In summary, lahat ng masarap lang sa bunganga at sa kaluluwa pero salbahe sa katawan ay bawal na.

Ang huling intake ko ng makasalanang mga inumin ay nangyari na kagabi. Gulaman kasama ang mga ex-team mates-friends. At saka yung napakalapot na Hershey's Dark Choco Loco drink na nakakaloka (galing sa 7-11) with Hot Momma I... Bilang ilang taon kaming di nagkasama.

Sana ay mawagi ko ito. At sana, totoo nga na may himala.

Anak, sorry sa Pilipinas ka pinanganak

Hindi attractive sa akin ang pangingibang bansa. Ayoko, basta ayoko. Kaya lang, may mga pangyayari na talaga namang nakakagalit, nakakainis at nakakapanlumo. Gusto mong mag-rebolusyon at magalsa-balutan. Eh kaso, ano namang magagawa mo?

Si TLO ay pinaganak na may cleft palate. Ang tawag sa atin, bingot. Pero yung kanya, hindi umabot sa labas ng bibig. Wala lang siyang ngala-ngala. Kapag ngumanga siya, kita agad ang butas ng ilong. Walang bubong, nakalimutang ilagay ng Diyos. Masyado yata kasing busy nung araw na iyon sa langit. O kaya, masyadong malikot si TLO. Hindi tuloy natapos.

Anyway, surgery daw ang solution. So sa edad na 9 months (dapat daw kasi masara ang butas bago siya mag-one year old), sabak si TLO sa operating table. Tapos, common daw na mapupunit ang tahi ng sastre (surgeon) kasi lumalaki ang bata. So sa edad na 14 months, opera ulit.

Habang nagkaka-edad si TLO, nanganganak ng mga problema itong dalawang operasyon na ito. Nakikipaghabulan kami sa mga solusyon.

1. Speech Delay
2. Squatter na mga ngipin. Tumutubo kung saan-saan.
3. Trauma sa kahit anong proseso na may kinalaman sa invasion ng bibig - therefore, ayaw ni TLO sa toothbrush.

Kung wala kami sa Pilipinas, hindi sana naging problema ang mga ito. Kasi, maraming standard na mga proseso na hindi pa uso rito sa atin. Kagaya ng:

1. Walang speech pathologist sa team of doctors na gumawa ng operation. May surgeon, anesthesiologist at pediatrician. Pero walang nakabantay sa magiging impact ng operation sa speech development.
2. Walang orthodontist at pedia dentist sa team. Tuloy, walang nakabantay sa magiging impact nung tahi nang tahi at gupit nang gupit na surgeon. Oo nga naman, gumupit ka ng bagang, ginamit mong pantapal sa butas. O, e di nalito ang mga ngipin.

Kuwento rin ng isang mahusay na speech therapist na matagal nag-practice sa Canada, doon daw, hindi inooperahan nang maaga ang mga batang may cleft. Ginagawan lang ng paraan na matakpan ang butas sa ngalangala para makakain at makainom ng maayos ang mga bata. Ang ginagamit ay plugs (minsan daw, tootsie roll). Ang operation ay ginagawa at the age of 7 or later in life pa - para walang epekto sa process of familiarization with the oral structures and sound production ng mga bagets. To top it all, reimbursable and/or subsidized ang lahat ng medical expenses ---- including speech therapy sessions!!!

Again, ano namang magagawa ng mga parents na nasa bansang gaya ng atin?

Tiis tiis, gasto gastos. Sa lahat ng frustration at financial tragedies, ang mas nakakadurog ng puso ay iyong pinagdadaanan ng bata.

Kaya anak, sorry sa Pilipinas ka pinanganak. Igagapang nating ayusin lahat ng kayang ayusin. Konting tiis pa.