Not-So-Clueless

I recently posted about my daughter's seizures and signed it as thecluelessmomma and my friend did not like it one bit. I had thought it was because of what I actually posted. But it was because she says I'm anything but CLUELESS! By her advise and that of my other friends, I am migrating to another site with another name which I have yet to figure out. And, so I am in the process of doing just that so most of my previous posts are missing. *sigh* I still feel clueless sometimes. But not as I did before!

I can't imagine the pain you are going through

“I can’t imagine the pain you are going through.”

I’ve always wanted to respond to this comment by others when they try to express their concern or admiration.

Really? You don’t say? It’s not that hard to imagine! Let’s give your child some brain damage so you have a clearer idea. I could be really sarcastic in my thoughts.

There are several poetic ways to describe the pain, but nothing really hits the nail. Let’s try to compare it closer to reality…

It’s not a pleasant comparison and it might not even be a fair one at that. But here it goes:

You mourn the death of a loved one. During the first few days it comes as a shock, sometimes you can be numb. It hasn’t sunk in yet. At the wake you are too busy attending to guests. After the funeral, you start feeling the loss because your loved one is no longer there with you. You wish for what could have been just normal, fun, happy and even sad times together as long as you are together. But it is all gone and that is certain and clear. After sometime, you are able to get on with life with some sadness in your heart, and you find other joys. It will depend on you how well you can cope with the loss and how long you stay at certain emotional states.

Gather up all that experience and give yourself a dose of it everyday, every hour, every minute and every second at varying quantities and intensities. Over and over again with a little bit of madness and uncertainty on the side. There, that’s the closest description I can get.

I mourn the death of a normal life for my child. The news, no matter how it is said, came as a shock. Sometimes I am numb. Sometimes it doesn’t sink into my head that she will forever be different because sometimes I dare to hope. I am too busy attending to her special needs that I forget her being. I feel the loss because I cannot communicate in normal ways to my child and she can be frustrated trying to communicate with me. I wish we can be together but sometimes even if she is with me, her mind is not and she is in her own world that I cannot enter no matter how hard I try to reach her. It is certain and clear that normalcy is gone, but it drives me to madness seeing slivers of hope whenever she reaches a milestone we were not expecting. Then it crumbles again when I lose her to seizures or imbalances in the brain, in the intestinal track or wherever it is that simply takes her away from me while I hold her. Or when she does a simple task so well and yet the next day she cannot do it again. Some days I can go through the day okay, some with sadness and some with immense joy. I jump from one emotional state to another, swinging like a wild pendulum going in all directions – including imploding within myself. Things will never be okay, and I’ll have to be okay with that.

So if you have mourned the death of a loved one, you might get an idea. However, it is also not a fair comparison. Because we still have precious time with our child with special needs – no matter what kind of time it is.

I once had an enlightening experience when I was arguing with a government employee about releasing some things from customs that was needed for the therapy of my child. She was giving me a difficult time. We were just arguing over the phone. Frustrated and angry, I said that she will never understand what my family is going through and that she is just adding to our burdens. She came back with tears in her voice saying, “buti ka pa, nandiyan pa anak mo kasama mo. Nawala ko ang aking anak sa leukemia at 19 years old siya nung namatay.” She hit me hard. Our line got cut. A few minutes later, when I got signal again I phoned her and was much calmer. She was much calmer too. We both apologized to each other, opened up our grief, became rather vulnerable and cried to each other. She said it was better I come to her office and explain in person. It never occurred to me that she was having a bad day; that she just needed further explanation to understand she really did not have to charge me any additional fees. It was good too that our lines got cut and allowed both of us some silence from each other. I had reflected on that experience and thanked God. Her promise to me was that she would pray for me and my daughter. I promised her that I would pray for her too. It ended well because weeks later, when I went to her office, I got the items without any additional fees. I have yet to meet her since she wasn’t at her office then. We went through and are going through different pains, but we understand each other. We can never completely imagine what it is like unless we go through it. So when someone tells me that she can’t imagine having a child with special needs, I have to stop myself from saying, “yes, you can’t unless you have one yourself.”

If you ask me though, I would rather go through the wild pendulum of emotions partially dying and getting up everyday rather than have one big gulp of the wreck brought by death. I want my daughter to be in my life. I love her for who she is. Ironically, I did not ask for a child with special needs, but now that I have her, I wouldn’t have her any other way. It is hard to explain and it is even harder to live.

Yes, you can’t imagine the terrible pain we go through. And you also can’t imagine the profound joy we have.

Viral infection, UTI or Dengue?

Toni has a had a fever since Wednesday night and we've been monitoring it since then. It spiked up to 39.6 Celsius at one point. Last night it stayed at 39.4 for quite a while and she kept crying and crying and I couldn't comfort her. I had a meltdown and cried. I felt so helpless! Every time I hugged her, I felt her skin burning and I just wanted to absorb all the heat. When your child is sick, you just can't bear it really. I wished it was me instead. After cries of discomfort and pain (I can just imagine the headache), she was whimpering. She lacks a lot of sleep. I lack sleep and she lacks more sleep because she needs much more than I do.

Doctor says it could be viral, U.T.I. or Dengue. I don't know which I prefer. I can't seem to collect enough urine for the lab test. When hubby fought with Dengue, I was scared too. Blood transfusion was an option, but he won the battle without going through it with a lot of yucky tasting kamote tops juice and Taua-Taua capsules

Kamote Top Juice Recipe for Dengue:
Boil a handful Kamote tops (the one with purple tints otherwise known as murado talbos ng kamote) in 4 glasses of water for 2-3 minutes. Let cool. Set aside leaves and serve as vegetable side dish. In one glass of the juice, squeeze in one Calamansi juice. Color of juice will change to blood red (Colorcode of foods meant for which part of our body). Add a pinch of rock salt. Drink at least 4 glasses a day. In 48 hours, blood chemistry including platelet should normalize. We did this for hubby last year and it worked wonders.

We also gave him 2 Taua-Taua capsules from Carica and 1 tablespoon of Dr. Gerry's Coco Nectar per day.

For Toni: We've been giving homeopathic remedies (pulsatilla, hypericum, belladonna to name a few) together with Tempra, lots of milk and sips of kamote tops juice in case it's dengue. Keep her hydrated is all we can do. Wiping her sweat and keeping her dry too. We got Talisay leaves wrapped around her which is said to suck out the heat from your body during fevers. We need to keep her fever down. Ironically, fever is a sign that her body is fighting an infection.

Anya, in the meantime seems fine. I haven't hugged her the whole day in case I am carrying the virus now. I've instructed Haidy to give her Sweet Echinacea 3x today and a teaspoon of Coco Nectar to strengthen her immune system for whatever might come her way.

What I haven't been doing is praying. When Anya was sick, I remember I prayed intensely and asked for Mama Mary's help. Now my mind is blank. Oh help me, Lord! Help my children get better soon. Tell me what to do.

....

September 26, 2011. It was Herpangina. Not a very pretty name and not a pretty site. Toni had rashes all over her face today. Hopefully it will go away soon. I just have to keep Anya and Toni apart for the next few days. Can Anya's immune system handle this if she gets it? Better not risk it!

T's tooth coming out

September 3, 2011

Today I saw a bit of T's tooth coming out. It's a cute white line that is very faint. I couldn't resist touching it so I sterilized my hands and fingers and let her bite me. Ooooh! Felt it! It's coming out all right!

Fear of Failure. I'm STUCK!

"The only thing we have to fear is fear itself." - President Franklin D. Roosevelt

Lately I have been feeling stuck. I feel "incapacitated" to do anything. I feel disabled. Anya's disability has somehow been magnifying itself to me. The older she gets, the more I see how far behind she is. I feel helpless because I can't seem to help my daughter.

Aside from that, Toni has a terrible rash. I just found out it is skin asthma. And she has lost weight. She is still within the normal weight for age but she seemed stuck too. She lost, she gained, lost and then gained. I hope she will continue to gain and continue to amaze me with her milestones.

Why am I feeling stuck? I believe I am overwhelmed with the things that we have to do for for Anya.

Pablo Beelen says she will walk and run. I believe so too. The concern is her cognitive development. Behavioral concerns came up, but by repetition, she has accepted more things --- in her mouth -- we spent half a session trying to get her to bite a cookie. Other kids do it in a split second. Imagine the frustration I feel. Why can't I change that to something positive? When she finally took a bite, I felt relieved and glad. But then when we tried again, it was another several minutes before she could do it again. And with a lot of protest. What kid doesn't want a cookie? She did like the cookie but to get her to try it...

I should try and try and try... Sometimes I get tired. Lately I do get tired. I should be spending more time with my children at home, but I am on the computer researching and researching and listing things to do without actually getting to do them. That sucks. I'm kinda stuck. Why?

I'm afraid to fail. So I am afraid to try. Not trying is already a failure. I try and succeed. Then I try again and not succeed. So I have to try and try again. Sometimes we get it, sometimes we don't. It is tiring.

Anya has had several improvements in her development. I just have to focus on those. I just can't see them even if they are shining bright enough.

Dreaming the future

I had a dream.. or nightmare.. or a vision. I saw an older child sitting on what appeared to be a high chair similar to the one Anya has right now. She was a teenager. She was in pigtails and flapping her arms like Anya is doing now. She was also shaking her head the way Anya does now. She was obviously "mentally retarded."

Is that how Anya will be in the future? Is God giving me a glimpse of how it will be so I will be prepared? Or am I being warned that because of my attitude, I am hindering Anya from developing further.

Oh Lord, open my eyes so that I can see. Let me appreciate all that she is and all that she is now able to do. Take away any negative thoughts I have. Keep me positive so that I will not pull back Anya's potential. She can be so much more than what I can imagine her to be. Let me dream great dreams and have that expectant faith.

God's answer came in the form of a website: www.disabilityisnatural.com and I can't wait to read more articles from the site!

Homeschool... Where do I begin

A few weeks ago it was a matter of whether I should homeschool or not. Minutes after the thought entered my mind, it wasn't a question anymore. It makes perfect sense to homeschool Anya and Toni. There is no school for Anya's needs so where else will she learn. And if I am to invest in materials for homeschool, Toni should benefit from it too. So yes, I will homeschool Toni too! Wish me well!!!

Where to begin! After researching online it can be overwhelming. There are different ways of homeschooling, apparently.

I had briefly told my parents about this and some of the things done for homeschooling. Immediately Wowo said that his mother did all those things! I'm sure they did. It just wasn't labeled as such. For example, today it is called infant massage. My lola would massage her kids every morning upon waking. And I remember my dad doing that when I was in gradeschool. That's how he would wake me in the morning. Gently coaxing me that I ended up wanting to stay in bed longer. Haplos-haplosin ang bata is now called intentional touch. Before, my lola wouldn't put much thought to it. She would just do it naturally and instinctively.

Parents these days are taught specific things they can do to educate their child when making a trip to the supermarket. Take them to the fruits section, count fruits to put in the basket, point to cereal cartons and read them together, etc. People are in such a hurry these days that they don't bother to spend some extra time to do this. They get the fruits themselves while the kids watch. They keep them in the cart instead of letting the kids look around on their own. (Okay safety is an issue here though.)

Homeschooling put all these educational experiences for your child in order. Yes, we must have a curriculum whether you do it yourself or get a ready made one. Since I'm starting, I would rather see one already prepared it tweek it to cater to Anya and Toni's needs. Although Toni should pretty much be able to do anything.

At this point, they are in the same level in many ways. So that should be easy. When they are at different levels, it shouldn't be that hard. I just need to organize myself! God help me!

Mom, what's wrong with that kid?

What a special parent wishes typical parents would do when their child encounters a child with special needs.

What do you do when your child asks “What’s wrong with her?” while pointing to an obviously disabled child well within earshot of everyone and the parent of the disabled child?

Most parents caught in this awkward situation immediately “shhh” their child, tell them not to be rude, not to bother the disabled child and pull them away. Parents of typical kids (yes that would be a politically correct term), who have no experience with kids with additional needs or special needs (another politically correct term), are often flustered in these situations when they are caught off guard. In their attempts to get away from the awkwardness of it all, they end up doing the worst thing they could do – pull away. They would have, in effect done the following:

1. Let the child with special needs feel more isolated and more ostracized from society. They may not express it, but it is hurtful. Very hurtful. They have enough pains already and this is a form of rejection.
2. Hurt the parent of the child with special needs as well. The mom may continue what she is doing and ignore you, but trust me, she heard you and your child. Quietly she is trying to counsel herself and trying to forgive you for your unintended rudeness. Special parents are good at hiding their pain to the point that “sainthood” is often dubbed on them.
3. Deprive your child to learn compassion, understanding and appreciation of the different kinds of people God has created. Your child is not being rude, but just curious. Also, give your child more credit – you’d be surprised at how much they can understand.
4. Pass up on your chance to grow in charity and kindness.

Understandably, the typical parent means well. She really doesn’t know how the special parent (yes, that is what we have termed parents of special kids) feels in the given scenario. Run away is the first instinct. Fortunately, there are ways a typical parent can turn it around.

While I do not speak in behalf of any group of special parents, I believe I share most of my sentiments with them. To begin with, the least you can do is smile at the special parent and deal with your own child’s questions later as you slowly try to walk away without “shhh-ing” your child. Smiling is easy, yet it takes away what a wonderful encounter it could have been.

So what do you do? Here is a possible step-by-step plan:

First, correct your child and say, “There is nothing wrong with her, she is just different.” You can also say, “differently-abled” or even “just sitting on a wheelchair.” But never say, “disabled,” “mentally challenged,” “retarded,” “sick” or “has a disease.” Never ever say that there is something wrong with the child because there certainly is nothing wrong with a child with special needs. Now, calling her a “special child” is also acceptable, but that might give you a harder time explaining to your young child what ‘special child’ really means. Furthermore, special child isn't used as often anymore since special is used as an adjective of the child. It's better to say child with special needs rather than special child. Think about it. You can use this when you explain it further to your child after you meet the child with special needs.

Bring your child’s attention to what they may have in common. This can be the most difficult for an adult – to see beyond the wheelchair or beyond the social disability (of autism). You can say, “She probably likes ice cream like you.” Or, “You probably have the same favourite color, or listen to the same music, or both have older brothers, or like to go swimming.” – sheesh, I can think of a hundred things they have in common.

Break the barrier of difference and encourage your child to say a simple “hi.” For the severely disabled you can prompt your child and say, “I’m sure she would like for you to say hi to her even if she won’t be able to say hi to you herself.” You can prepare your child not to expect the usual response. This is the ultimate example of giving something without expecting anything or any response in return.

A simple “Hi” means the world to a child with special needs and to her parents. Children with special needs do not have an easy time making friends. They don’t even get invited to play dates as often because typical families wouldn’t know how their child can play with the her. Most children with special needs sit in the back of the classroom of their other siblings and are already happy watching abled-children do their normal activities. Imagine what greater joy you and your child can give if you interact with them.

Be honest. When your child follows it up with, “Why is she different” you have to be honest and say, “I don’t really know, we can ask her mommy.” Up until this time, the special mom has been wanting to share her child’s story with you and your child. She has heard your whole conversation with your own child and will now rescue you from further questions you cannot answer or from potentially becoming unintentionally rude or hurtful to her and her child with special needs.

Know the child before you know the disability. If the child were not a child with special needs, what are among the first things you ask or do? You introduce yourself, ask her name and her age right? Do the same. Tell your child to ask the special parent what is her child’s name if the child won’t be able to answer. In a typical situation, this isn’t being rude but being friendly.

After knowing the child, ask away. Special parents love to talk about their kids just like typical parents like to brag about their kids. Special parents cannot say, “honor student yan!” Or even, “she can count 1-10, she’s not shy around others and sings so well, she can sit on her own.” Special parents may not even ever get to say these about their kids. So give this chance for special parents to briefly explain what their kids can and cannot do. You can say, “Could you help me? I hope it doesn’t seem rude to you. My child is just curious. May I know what your child’s condition is so I can better explain to my child later?”

Notice two things: you asked for help and let the special parent feel better knowing she is helping you and not the other way round. Second, you offered to listen to her. Ahhh yes, that is what special parents really need – someone to listen. Take note also the safest word is “condition.” You wouldn’t want to ask, “What’s your child sickness/case/problem/disability?” Or worse, “What is wrong with her?” Another term you can use is “What is her diagnosis or special needs?”

Let the special parent share with you and your child. Special parents can simplify medical terms and conditions for the understanding of even your toddler. If your child sees you talking to the parent, she won’t be shy to approach the child with special needs. When you are engaged in a conversation, don’t worry if your child will say something embarrassing. “Mom, the kid drools, her eyes are duling cross-eyed, she looks weird, she is too hyper and does strange things.” If there is that awkward silence, do not pull away, do not call your child rude, do not tell your child not to say such things and do not ignore what your child says. Technically, your child is just being truthful in what she sees physically. There is no need to apologize for your child’s curiosity. This is her first encounter with a child with special needs after all. When you apologize, you actually build a barrier again because you are showing your own embarrassment and giving the special parent a reason to be embarrassed or awkward too. Like what we’ve said earlier, you can instead change the focus on what they have in common. Seems difficult to do?

Let’s try this example: “She drools” Say, “Oh you notice that. I also notice that she has a really cool pair of shoes. Do you like her shoes?” “Mom, she acts weird, talks funny and doesn’t even look at me.” A good response would be, “I can see why you say that, but she’s not that different from you and me. She probably likes listening to stories and making friends…” If you have been talking to the special parent, you may not have to say anything to your child. You may hear the special parent say, “Yes, she drools and does have a hard time keeping her mouth closed but she opens it even wider when she eats ice cream. Do you like ice cream?” You would be surprised what special parents can tell your child. When you act comfortable around them, it makes things easier for everyone. Any slip-ups in terminologies are excusable, because by this time, the special parent should feel that you mean well especially if you have made eye contact and exchanged smiles.

Take it as an opportunity. Sometimes your child doesn’t even have to ask. When you catch your child staring at a child with special needs, just break the barrier and encourage her to go say “hi.” When you see the child first before the disability, everything becomes clearer and more comfortable for everyone.

In the rare case that the special parent shows some sarcasm or resentful look, just continue to smile and try to be as polite as possible. Just like any other parent, she is probably having a bad day. Or she probably already got some rude stares from other typical parents and is just tired from all of it. At least you know you did your part and not added to their hurts.

The friendship you offer is no more and no less than the friendship she can give. You can walk away inspired by how well she carries herself and her child. Your own child will remember this encounter and become a more compassionate person. You would have given your child the precious gift of character building. You’ll definitely feel better than if you had “shhh” your child because that just confuses your child more. And the special parent would have gone home believing that their child can be seen beyond the disability. That the tiring trip to take their child with special needs out of the house is well worth it because it will bring them beautiful encounters as well.

So the next time you see a child with special needs, remember to smile, break the barrier, know the child before the disability. Seize this opportunity to grow in character.

Finally, may I add, walk away with a silent prayer of thanksgiving in your heart. Thank the Lord for this brief encounter that can only enrich you. Thank Him for your blessings. Ask the Lord to continue to bless you and the special parent to give you both the strength you need to nurture and care for the child He gave you – whether typical or special because either way they are all beautiful and perfect children of God.

• Fell free to pass this around. Share similar stories if you have any. Help me improve on this article if you have other ideas. We’re beyond creating awareness – because what use is awareness if there is no action. Let’s break barriers!
• Come back again for another post I’m working on: “What special parents wish typical parents know.” Suggest other topics. Ask questions and I’ll try to answer.

Thoughts for today

"Special children are incapable of committing sin and fully capable of converting sinners." My guardian angel whispered this to me today.

I got bangs

A friend and fellow mommy blogger started her first blog writing contest which I found in her facebook status. Oh, her first contest!

Click "like."

I'll join it.

Topic is: What do I do to take care of me?

? ? ? . . . ? ? ?

. . . ? ? ? . . .

? ? ? . . . ? ? ?

Oh my GHAD!!! What do I do to take care of me???!!! I honestly could not answer the simplest question. I have NOT been taking care of ME! Mother's Day came and went and I had absolutely no idea how to take care of me. I forgot to take care of my appearance. My friend called me losyang to my face! And I vowed before never to lose it!

Two kids: A 23 month old special needs child and a 5 month old fully breastfed (no milk bottles yet) baby is not an excuse. I needed to be saved and one look at me screams, "give me a make-over!" I forgot the last time I bought myself an outfit. My make-up kit has expired make-up. My eyebrows were shapeless. My hair... oh my ghad, let's not even go there.

Since I have a very short window to leave my 5 month baby, I told my husband I would go to the nearest salon that offered the cheapest price. I wanted to be back home quickly and I didn't want to spend. All I could see were the bills to be paid and the mounting expenses of having a special needs child and a fast growing 5 month baby. I felt guilty spending on myself. So I told hubby I'd get that PhP39.95 haircut. He told me I'd regret it and insisted I go to a REAL salon.

"How could you even think of spending? We're up to our neck with bills!" I said.

"We'll manage, you have to get a haircut you like." said hubby.

"They're all the same. It's just a trim with some layering in the back."

"You'll regret it and probably spend even more to have it fixed."

"We'll see."

Two hours later I came back with hair that looked like my own mother cut it from necessity because of bubblegum getting tangled. Well, bubblegum in my hair would have looked better. I had to blow dry it for several days just to make it look more decent. I had to swallow what I had insisted with hubby. He said nothing but his face had that "I told you so" look every time he stared at my hair. Terrrible! The blades hit my hair for a total of 10 minutes. I wasn't even halfway the magazine I was browsing when the "hair cutter" told me I was all done. Hair cutter and NOT hair stylist. What style?! That's it? I can't go home yet, I just got here. So I got a manicure pedicure because it was cheap anyway. Mani-Pedi went okay but I was like the back seat driver of the manicurista. Who still uses that pink dye color for a no nail polish look? Is that watered down betadine? Oh my ghad! Save me! I felt robbed of the cheap amount I paid, went next door to buy myself ice cream hoping to feel slightly better before coming home.

My friend who recently visited me was just so bothered with my hair. She saw me at home so I had not blow dried my hair. It was dripping wet and dried up on it's own by the time she left.

"Layerd ba yan?" What the h*ll happened to you? Losyang!

She saved me. She set a date, took me to the real salon, talked to the hair STYLIST... and dared me to get bangs. The last time I got bangs was when I was a toddler! Yeah, those kinds of bangs that look like a bunot. I got that. And the stylist fixed the back of my hair to a true layered look.

"Now that's a hairstyle to wear."

Next is getting a new wardrobe and throwing away my losyang blouses.
Replace dull black shoes and cheap rubber flip flops or thongs or whatever you call 'em.
Invest in stylish everyday shoes and sandals.
Buy make-up and USE make-up.
Go bonding with girlfriends.
Buy expensive yoghurt and not feel guilty.
Look good feel good.
Do it all for MYSELF and become a better mom that way.

Catching my husband check me out is a great bonus. He thanked my friend who brought me to the real salon :)

What did I do to start taking care of me? . . . I started with getting bangs. I haven't decided yet what I'll do next month but definitely I will not look losyang! anymore!

The Beatitudes for Friends of Persons with Disabilities

While searching for a vegetarian blogger, I came upon this from another special mom blogger. It's beautiful and got me teary eyed. I suppose if my daughter read this to me one day I would break down too...

Blessed are you who take time to listen to difficult speech, for you help us to know that if we persevere, we can be understood.

Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.

Blessed are you who never bid us to ‘Hurry up’ and more blessed you who do not snatch our
tasks from our hands to do them for us, for often we need time rather than help.

Blessed are you who stand behind us as we enter new and untried ventures,

For our failures will be outweighed by the times when we surprise ourselves and you.

Blessed are you who ask for our help, for our greatest need is to be needed.

Blessed are you who help us with the graciousness of Christ, who do not bruise
the reed or quench the flax, for often we need the help we cannot ask for.

Blessed are you when by all these things you ensure that the thing that makes us
individuals is not our peculiar muscles, nor our wounded nervous system, nor our difficulties
in learning, but in the God-given self which no infirmity can confine.

Rejoice and be exceedingly glad and that you have given us reassurance that could never
be spoken in words, for you deal with us as God dealt with His own children.

-Author Unknown

And I believe it came from this version which I also came across (from the Mariposa Ministry)...

Blessed are you who take time to listen when communication is difficult,
for God will grant you an understanding heart.

Blessed are you who walk unembarrassed with those who are "different,"
for God will grant you self-acceptance.

Blessed are you who are patient with us who struggle to do things you can do readily, and blessed are you who do not snatch our tasks from our hands to do them for us,
for God will grant you patience with yourselves.

Blessed are you who encourage and support persons with disabilities in new and uncertain ventures,
for God will renew your courage to dream and to dare.

Blessed are you who can recognize the gifts and seek the help of those who are weak and dependent,
for God will heal your fear of future losses.

Blessed are you who freely offer yourselves as eyes for the blind and as hands and legs for the paralyzed,
for you shall be helped by the blind and the paralyzed.

Blessed are you when you see past physical or mental limitations, defects, or deformities, and affirm each one’s beautiful God-given personhood,
for you will know that God receives even your body as a living sacrifice, holy and pleasing to Him.

Rejoice and be exceeding glad,
for you will see Christ incarnate
in the fellowship of all believers.

Cross Lateral Exercise

Anya did two good things today: 1) use arms to balance cross lateral style and 2) look hard right.

Lately I’ve been giving Anya massages in the morning when she wakes. I massage her legs where there seems to be some tightness. This tightness is causing her feet to fold in which can cause her to have elephant feet or flat feet. I will have to keep doing this daily to see some improvement. I was worried the AFOs were not helping since her feet look the same. Well, teacher Anna says at least it didn’t get any worse.

After a short massage, we do cross lateral fun with her arms and feet. She likes it and loves it when I do it at different speeds. She seems to like it more when she has to anticipate it coming. So when she was losing balance while sitting and swung her arms in front of her (literally crossing them over each other) to get her center again, I knew it was because of these morning exercises.

When her dad carried her on his lap, she was looking to the right like she would to her left – the one where she really stretches her neck out. Must be the cross lateral exercises too. Okay, that has to be a morning ritual now.

Infant Visual Stimulation - make your own part 3

A tight fist. Anya’s left hand is often closed. How can she explore if she won’t open it up. Pablo improvised some garter wrapped in her palms to open up her hands. Encouraging her to feel different textures should open up her curiosity. Homework is to find rough textures like sand paper and bathroom spiked no-slip plastic mats.


Oma found plastic brush. Feels rough. Opened up Anya's hand. She pauses to feel it.


A cookie can makes loud clanking noise when she bangs on it. That's a sticker at the bottom part of the can. I thought it added more color and contrast.


It's also a good storage box for the La Maze magnetic stackable critters. Teehee.


Got this large powdered milk can from my sisinlaw. Anya liked it as a drum. Liked it even better when the magnetic critters started hanging on to it. Swipe away Anya!


Bottled water... fill it with silver glitters... add food coloring (or in this case, mouthwash and dishwashing soap)... shake, twist, twirl... see the lights reflect on the glitters...see her mesmerized by the sight. Got this idea from our Kindermusik teacher :)

Homemade visual and sound toys can be better for Anya. Tin cans, water bottles spoons and silverware offer more stimulation than manufactured toys. Improvise. Be creative.

Play, Patience, Perseverance,

"Play is an essential part of growing up and researchers believe it's critical to ensure children reach their full potential in life. " - Ellie Dixon on the importance of play

Play is so important to a child because it is her way of learning. Curiosity is her ally. Playing is a sign for her thirst for knowledge.

I completely agree on the importance of play. And I highly encourage it of my child. But she does not seem to know how to play. When I present her with toys, she doesn't play with them. I have to literally force her to hold a spoon or rattle. Her therapist tied a spoon to her hand with a garter and stuck a velcro so when she swipes a toy with her ballistic movements, the toy sticks to her hand.

For normal children, you can leave them with a bag of toys and they will be preoccupied with it for at least several minutes - for as long as the toys are interesting. For A, it took her a while to actually look at the toy. It takes a lot of patience to get her interested in anything. It can be frustrating.

It's like the chicken and egg story. She has to play to learn. She has to learn to play. We have to start somewhere.

We've been reading her books and getting better responses from her. She looks at the photos and sometimes utters some sounds. She smiles at the really colorful photos too.

The whistle soft piano is a big help. She used to have useless ballistic movements of her arms. She would flap and flap them. Then we put the toy in front and a drum so it would make noise. At first it seems she didn't know what she was hitting. But sometimes, it looks like she wants to hit the toy. She realizes that she hits it. Cause and effect. Something so basic in play that we adults take for granted.

She's been busy the past few weeks with her hands. She sucks her thumb a lot. And sometimes it seems like she wants to pull out her hand with the other hand. And she stares at her hands too by opening them up and sometimes closing them. More body awareness I suppose. These are good signs.

I suppose I am just being impatient. To grow in patience, one has to be patient. Now I admire teachers because they are so tireless in trying to get a child to learn. I need to persevere in teaching Anya to play so that she can eventually play to learn. Hard work will pay off one day. I just hope my drive and level of enthusiasm doesn't wither before A gets to start playing on her own. Sometimes I wish I could hear Anya whine at the mall and ask me to buy her a toy. How I wish I could be that mom whom I saw a few days ago in the supermarket - when she nonchalantly brushed of her whining daughter, "that's too much anak, you don't need that toy." How I wish I could one day say, "You're too old for that toy A."

Playing with food

Pablo Beelen's first session for 2011 and he encourages Anya to play with food!

Observation: when there is a toy in front of her, she taps, if none, she sucks her thumb.

Never underestimate a child’s brain to absorb a lot of information. Anya is ready for her toys. Must take them out of the boxes and find space for them.

To vaccine or NOT to vaccine

Debating inside my head… Vaccines for Toni? She’s 6 weeks in a few days and due for a Rotarix shot. Still hesitating on giving her vaccines. Anya hasn’t had any except for the mandated HepB soon after birth done at the hospital. She had 1 more shot a month after that. When her seizures manifested, doctors postponed any shots afterward and kept her at the wait and see stage. Well, her seizures are gone and she seems to be doing well without vaccines.

The thought of giving my child a virus puzzles me. They get a fever afterward and somehow their body seems to get rid of the virus by developing anti-bodies to fight it. Why can’t it be done in the natural course then? Why not contract the virus without injecting it and then fight it off? Yes, it means they get sick. They develop and immune system to fight it.

Concerns are…. Toni will probably be more exposed to other kids and she can carry certain viruses. Anya can then get sick. Since Anya’s immune system is unlike regular children, she will have a harder time fighting it off. It’s unpredictable. That’s why she doesn’t have the vaccine in the first place. Toni, on the other hand, can transmit the virus if she catches it. Vaccine Toni to protect Anya? Strengthen their immune system and fight it off? Viruses today aren’t like they were before. They’re much harder to fight simply because our health level isn’t the same – because the food we eat isn’t the same. Hence, supplements. Are supplements enough? Natural sources are better. Natural sources lack the nutrients because of hormones and chemicals. Wait, going off topic… To vaccine or not to vaccine, that is the question. And remains a question. Will postpone decision for now.

Enough Vestibular Input?

Anya seemed to be afraid of the improvised tea cup turner whereas the first time she tried it, she loved it and was kicking wildly. She seemed to want to get out of her Bumbo seat.

Giving her Superman throws is not as impressive for her anymore. Perhaps she has enough vestibular input? Or she has more body awareness and fears what she can’t control. Although it was a joy to see her screaming giggles, these changes should be good.