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.

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.

Current Therapies

Recently Anya came home from a trip to Singapore. It was for her second ABR assessment and therapy. I should have a separate entry about ABR and what it is all about.

She had significant improvement in her musculoskeletal development, but more was expected. They were expecting us to log in more hours considering Anya is a very cooperative child compared to other children undergoing the same treatment. Also, considering her fascia isn’t as bad as others. Still we were happy with her improvements.

This is Anya during an ABR session. It's like a massage so she is lying down most of the time.

We informed them of the Bobath approach and that we had tried it on Anya. We saw improvement in Anya using the Bobath approach. I’m sure I have another blog about that somewhere in this site. Every time my parents mentioned Bobath, they just shook their heads in disagreement. It was contrary to their approach and promotes rigidity. It “forces” the child to do certain movements. For some children, it will do them a lot of good – that is if you are lucky. However, in several cases the child will walk but will do so awkwardly and will risk over exerting the muscles that one day the child will just not walk anymore. It happened already to one of their patients.

Before going to Singapore, Anya was doing a lot of the Bobath exercises. She was also regularly seeing her Cranio-Sacral Therapist CST. Again you have to see if I have a separate blog on that. ABR nodded to CST since they compliment each other.

It has been several weeks since Anya got back from Singapore and we have been doing a lot of ABR and a lot less of Bobath. The changes we noticed are significant. We realize that we cannot just do one or the other. We have to do both. ABR is very passive and this made Anya quite L.A.Z.Y. We try not to say it in front of her because somehow we know she can “hear” it. We believe the more you call a person that way, the more the person will be inclined to be that way for life.

Our weekly Physical Therapist who was with us during our sessions for the Bobath approach under Pablo Beelen, and who is familiar with ABR told us that we really have to do both. It cannot be just passive therapy and it also cannot be too aggressive and forceful because this may make the child miserable and crying often. We agreed with our therapist. She comes weekly and knows Anya more than ABR therapists in Singapore who see her for 2 days every 4 months. And she knows Anya more than Pablo Beelen who saw her 3 times only and will probably see her only every 6 months for 3-5 sessions each visit in Manila.

And as Anya’s parents, we realize we have to do both. The trick now is time management. And of course budget.

There are also other therapies we want to do but we are limited because of the budget. We spoke with other parents and learn from them what we can try with Anya. One is the HBOT. It is already available here in Manila and many offer it. However, we have to consider the expenses, the logistics and the time spent travelling – which could have been precious time doing the other therapies needed.

This is Anya able to sit unsupported for a few seconds. We were doing a lot of the Bobath approach then. Now she has difficulty so we have to do some more time doing Bobath.

I just gave our helpers and caregivers a pep talk. Reassigned their tasks and gave them targets on how much time they should give for Anya’s therapy. I had forgotten to mention to them though, that they are very privileged to have Anya in their lives. She is an angel so pure and clean. Every time you hold her, you are holding an angel of God. I suppose that is the most important thing to bear in mind when giving Anya therapy. You are teaching her body to get better and improve. Yet at the same time, she is teaching you to be a better person in her own miraculous way.

Books for Special Mommas

BOOK REVIEWS

Aside from having a diary as an outlet for my feelings and emotions, the first thing I planned on next was doing a lot of reading and research on special children and conditions my child may have.

I cried many buckets of tears and slowly accepted I have a special child. I had to move quickly, I told myself. The more time I spend on crying, the less time I have to help my child. I read through my diary just a few days ago and it helped me understand how I got to where I am now. A little more stable I suppose. And maybe I’ll share what I felt back then another time.

I did start on researching as soon as Anya’s diagnosis and MRI results were shown. At first it was just whatever was on the internet. Some information would conflict with information from other websites. And I remember Anya’s physical therapist saying that it’s better to read books and publications. So we purchased a few books and still continue to purchase some more. I actually borrowed books and returned them to the owners after reading them. And a few books were given to us by friends who were thoughtful enough to think we needed it more than they did.

Some are for special cases and some books are applicable to parents with normal children. It’s just that parents with normal children sometimes don’t bother with knowing what MORE can they do for the development of their child. Special mommas will go through countless literature and research to learn what others have tried, if it worked and if it will apply to their child.

Here are a few of the books we’ve read and I hope to add more as I read more:


Seizures and Epilepsy in Childhood: A Guide
By Freeman, Viling and Pillas
A Johns Hopkins Press Health Book

The title says it all! It really is a guide. After reading this, we realized that Anya had seizures even before that day we rushed her to the emergency room. Who would have guessed that lip smacking was already a seizure? All the while we thought she was imitating us kissing her. This book also kept us calm during her seizure attacks. Because of what we’ve read, we did not panic and knew how to deal with it. We also did not have to rush her to the hospital – although there was one time I almost did because she was blue for a few seconds. The neurologist said 20 minutes without oxygen would be danger zone but of course even before reaching 20 seconds of no oxygen I was already rushing to the car. Well, she was able to breath even before 20 seconds and the seizure attack began to wane so that was just one frightful episode.

The book also helped us to decide on the medications Anya was taking. We read the small fine print on the medicines and asked around too. And this book, since it was updated, gave us the hard facts. The liver could suffer long term from medications. And another type of medication would be given should the liver not be able to cope – said our doctor.

Well, keeping her drugged was the last thing we wanted. We did see children who have been on the same drug for several years as maintenance. The parents were happy that their child had no seizures. But looking at the child, I said to myself. Yes, no seizure and also no brain activity – since I had read the book already.

We decided to go with homeopathic remedies. That would be another blog entry. And to date, she has no seizures and no medications. And brain activity is all there!

The Ketogenic Diet
A treatment for children and others with epilepsy
By Freeman, Kossoff, Freeman and Kelly

I do have this book and did read through it quickly. I thought we would need it, but as you can see, we did not need to go on the Ketogenic diet. Thank goodness! Because it is quite hard and expensive to maintain!




What to Do About Your Brain Injured Child
By Glenn Doman

I have no idea why my brother had this book. But I’m sure glad he had it! Even if it’s an old edition, it still helped. He got it on book sale after he purchased the other Doman books – which I have also read and find very helpful.

This is a good starter book for any parent who just found out that they have a special child. It gives you hope and jump starts you on your research and knowledge.

I was about to enroll in the program but we didn’t have enough funds for it. And we were able to do a lot of other research and decided to do other things that are within our financial capacity. You really have to decide where to put your money and what is a good investment for your child.

I would say that this book is a basic must for special parents.

How Smart is Your Baby
By Glenn Doman and Janet Doman

I had a friend purchase this book for me in Singapore although you can get in online too. And when another friend saw the book, he made fun of the title and mocked it a bit which annoyed me at that time.

This book really helped by giving us other activities we can do with our child other than therapy. I would call it “constructive play” activities. Of course there are many other books out there that give you ideas on what you can do with you child. But Glenn Doman activities were made for special children. This book, however, can be applied to normal children. And if done so, normal children would not be in the average but would excel in so many things. I plan to apply what we’ve learned here for our other children.













Other Doman books you may consider are The How to Teach your Baby books – Read, Math, Physically Superb, Encyclopedic Knowledge, Swim. My brother has everything in the old edition which is still good. What we don’t have is How To Teach Your Baby to Swim. Maybe after Anya gets better from her cough and cold we will get her in the pool.

Don’t get all books at once though. It may be overwhelming! Or you can get them all for cheaper shipping fees but you don’t have to do all of them right away. Pace yourself!

The New Book of Baby and Child Massage
By Robert Toporek

This is an easy reading book. Comes with illustrations too! My dad said that my grandmother massaged all her children when they were babies. And in the provinces, the old people have been doing this. There are so many benefits to massaging your baby. And more often the parent benefit more. It’s very calming and relaxing. And really, touching your baby often does wonders.

It’s just great that there is a book with a step by step guide. And part by part too! Even facial massage. The book also explains why you massage a certain way. Anya’s therapist also says that they have studied what “strokes” are the best ones.

But even if you don’t have this book yet, just hold your child and your hands will guide you on how to gently massage her.

Children with Starving Brains
A Medical Treatment Guide for Autism Spectrum Disorder
By Jaquelyn McCandless

Since we are seeing a biomedical practitioner, we thought this would be a good book. We got hold of it even before our doctor recommended it. Haven’t gone through most of it yet, but so far it has been very informative.

Anya does not have autism, but biomedical treatment would greatly benefit her. I wondered why so many supplements are needed these days. The explanation is simple. The food we take isn’t the same as the food we used to take. And the food our parents ate during their pregnancy when they were carrying us isn’t the same as what our grandparents ate. The food has more chemicals, more steroids, more processing, less nutrients, less vitamins, less minerals. More of what we don’t need and less of what we need. The environment isn’t the same. And we’ve paid for it through the years. And in my case, my child is suffering from it.

Each child has a different chemical composition, so to speak, so we need a doctor to guide us. Anya had this test done and we found out that she had a lot of toxins in her body. And that her biological make-up could not cope with it. So there! We have to find supplements that will help her and foods to avoid for her.

Your Child without Glasses? Help your child to perfect eyesight without glasses
By Janet Goodrich

Can’t find a photo of the book online and don’t want the hassle of taking a photo of the book I have. I just borrowed this book by the way. But I would like to get my own copy as well as the other more recent books of Goodrich.

I wish I had read this book before. Or at least I wish my parents did. I have poor eyesight. And the only reason why I don’t wear glasses or contact lenses now is because I had laser surgery done a few years ago. If only I knew these before! Well, at least I can start applying them now and hopefully not need reading glasses at 40 – as what the eye doctor said would probably happen even after surgery.

This book comes with fun activities and even songs with notes for the keyboard! Yes, you sing to your child to help her vision. I’m sure it will also help Anya’s hearing problems! Hmmm… time to find a book on how to improve her hearing.

Embracing God’s Purpose for My Special Child
By Malou Tiongson-Ortiz

I read this book without tears, to my surprise. My dad has been trying to read it, but after a few paragraphs he has to put it down because his face is covered in tears. A fellow special mom recommended it to me and I immediately went to the local bookstore to purchase a copy. It is written by a Filipino mom just like me. Her daughter has Down’s Syndrome.

It really puts everything in perspective and really helps special parents cope. She had put into writing all that was in my thoughts and in my heart. At least most of it! Everything she said I knew, perhaps because of my Catholic upbringing. She quotes a lot from the Holy Bible and it has been the same Christian teaching ever since the beginning of Christianity. She had applied it all to having a special child and reading her book not only inspired me, but organized my thoughts and strengthened my resolve. I know now that God was, is and will always be beside me because of the blessing He gave us.

This is another basic must for any special parent. And I dare say, even for none Christians. It may help you find your faith. All the more I am convinced that the only way we can really love our special child, is to love God and place complete trust in Him.

I read this once, but it is good practice to read it over and over again to find strength.

Lord, I place Anya at the foot of your cross. Anya is your warrior here on earth fighting to save as many lives by touching and inspiring them to be holy and pure as she is. As her mother, I place my life in Your hands. Mama Mary, guide me in being the best mother to Anya. Do as you will, Lord. I pray that my life will be a worthy offering to You, because I know I do not deserve a blessing such as Anya.

My child's burden in life

Sometimes I think she was given to me so I can be delivered from my sins. Sometimes I think she suffers for my sake. So that my sins may be forgiven. During her seizure attacks, she cries in pain. When she has an upset stomach filled with gas because of the medication, she cries for 1 hour straight. All I can do is rub oil on her belly, put hot compress and keep lifting her legs up so she can release gas. And the whole time she is crying. If she were able to speak, she would tell us that her head aches during and right after a seizure. Why does my baby suffer so much? Why not me instead? I deserve to go through the pain and my baby does not. Perhaps she carries the burden of her sinful mother. She is suffering on my behalf. And seeing her suffer is the only thing the Lord will allow me to suffer. Whatever the Lord says. My baby can handle it, I cannot. I just have to bear seeing her in pain.

A few friends have told me not to blame myself or ask if there was anything wrong I did during the pregnancy or right after I gave birth. Not once did I think of that. Nor did I think that the Lord is allowing this so I can suffer. It’s the other way round. Anya suffers to sanctify me and perhaps a few others. Well, at least that is what I think. My sinfulness is what I blame for Anya’s condition.

The prognosis that Anya will have mental retardation led me to think that Anya will have a limited capacity for happiness. That is, happiness in a way we all experience it. Oh I believe she will be happy to the fullest of her capacity, but not to the fullest of our capacity. We have a large glass to fill. She has a small glass. And that small glass is easily filled. Here I blame myself again. Because I ask why did the Lord give me a child that has a small glass? Is it because the Lord thinks that I cannot fill her glass if it were bigger? Because I cannot fill my own glass to the brim, I can only fill Anya’s with a small amount. And because the Lord loves Anya so much, He made her a smaller glass because her mom cannot fill a big glass. Is that all that I can give to my daughter?

Others have said that mothers with special children have more to do in order to give their child happiness. I would rather say that it is much easier to make these children happy because their joys are simple. Simple compared to what we usually expect. I don’t need to send her to Disneyland to make her happy. I just have to be there for her. That should be easier, in essence. It is hard to give up many things like my alone time. The Lord wants me to simplify my life. I have to give up certain comforts. To do the right thing is actually more rewarding. So the Lord is giving me an opportunity to do well as a mother because Anya will not be asking much. She will be asking a lot of my time. The Lord has given that to everyone, but not everyone uses it wisely. Now my room for error is less, because I will obviously be spending more time with my daughter. Anya does not give me an excuse to make a mistake.

I am the burden that my child carries. The Lord has given me an opportunity to do things right. Anya’s development on earth is not a measure of my success. I just hope I don’t screw up.