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.

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.

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?

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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!