NorMal... really...

People love to use words, they don’t really understand. Some phrase is catchy so we all use it, it’s cool. In the circle of people with special needs, you will find this a popular sentence. 

“He is not normal."

"Normal children would do this."

"She is different, cause normal children her age would not scream like that.” 

People and some professionals are so quick to state that your child is not normal.

So what does normal, mean? The norm describes the average statistic. And that itself is a variable.  In a room full of people who have autism, individuals with autism would be the norm. And you may be the weirdo, right. So keep in mind that the term norm, is very subjective. Be wise about using it.

Breaking news

I just had a lunch date with my sister and her little boy. They are in the preparation of sending their soon-to-be eightheenth month old to school. It's an exciting journey for both parents and child. It made me start thinking about preshcool for the unborn baby, already. I know its way to early to be thinking about such things. But having been in the childcare senario almost all my working life, I do recall when my boys were send off. This story is more for my boy with special needs. It goes something like this...

The phone rings, and you take a deep breathe... could it be another call for your child? Are you afraid of such calls when teachers call you to inform you about the outburst in school, or the meltdown of your child.

These are normally the beginning stages for some parents, before they are thrust into the tornado called autism. But I must say, I don't remember ever getting such a call for Ivan.

When Ivan was eighteen months old, I enrolled him into a Childcare.(just like his elder brother) I worked for the same management, but was in another branch. I would check with my colleagues about Ivan's progress. They didn't say much as they thought he was going through his anxiety phase.

But the updates that I got from the teachers, they were not much to work on. The teachers mentioned that he didn't like transitions. When the class left for the playground, Ivan would cry to leave the class. Then when they finally got him there, returning back to class was another fiasco. These reports however, could also be similar to a child who is getting used to the new routines in the school, something in the range of separation anxiety.

After a month, when most of the children had settled, Ivan was still fussy and anxious. He would cry then drink milk and fall asleep. My boss was doing her Degree at that time and noticed something peculiar about Ivan's behaviour. She realized that there were some traits if autism in Ivan.

She called me up, and asked me up come down after work. I did and I must admit I was thrown off by what she said.

She very cautiously, addressed the behaviour issues she noticed and then introduced the word, autism. By then my head was spinning. What? Who? How? Huh?

But being an educator myself, also because this information was coming from someone I respected, I remained calm. My husband on the other hand didn't take the news too well.

We were on two ends of the equation. We were lost and confused. We were both in no shape to help our little boy. We went through lots of disagreements and decided to wait on the matter eventually.


Somewhere around a year later, I told Peter, that something had to be done. We could not just sit around waiting, thinking that our boys was simply a late bloomer. I handed him the autism checklist and told him to check it by himself. Should he find many similarities, then he was to move in my direction. 


He did the checklist and there was no denying. There was something amiss. It was time me got some form of help. And so the journey began.

Are you NORMAL?

Many atimes, I have heard this "He is not normal." Okay, now be really honest... what is normal?
Two eyes, a nose and a mouth?
Is being skinny normal?
Is having all your limbs normal?
What is NORMAL?
Who defines the norm?

My child spoke in sentences when he was five, so what is the norm? Years ago, he would have been termed a late bloomer, but today there is an abundant variety of labels to choose from. As we head into the new millennium, everything has new guidelines.

When I went to primary one, we were taught the words 'boy' and 'girl'. Today, preschoolers can write five sentence compositions, even before entering primary one. I repeat again, what is the norm?


I guess, the hardest part of it all, is that some kids barely have a shot at life. They are labeled even before life begins. Who is to say that you cannot change? Even IQ tests, that are done, are not one hundred percent accurate. Furthermore, they are only valid for six months. Everything changes as we grow, maturity increased, causing improvement in many areas.

Schools are quick to trust the IQ test results (that is only valid for six months) to transfer a child out of mainstream. Who is to say that with a better support system, the child will not excel? How will you ever know? Your child has been deprived the right to try to live his/her life.

I was told, that a child who is diagnosed with autism, is not allowed to drive. But a heart patient is!?!
A heart patient could get an attack any moment, and lose the control of the wheel. (God forbid). The individual with autism, would be much more careful, as he/she would follow the rules and expectations earnestly. Or what about a "normal" person who is drunk? Is he/she then, no longer normal?

Ponder about the word "NORMAL". What does it mean to you?

Is she persistent or simply irritating?

Well, I am pretty sure many professionals contemplated with that question when it comes to me. I have met some mothers who trust in the system, and believe that since they are paying for the service, they don't have to do any thing more, but trust. When Ivan was schooled at ****, I used to sit and wait at the lobby for his lesson to be over. There I would meet some other mums who do likewise. We get to talking and they find that, they want so much more for their chidlren, but don't know where to start.Yes, we should trust the professionals, but aren't we the client. Should we not know what we want. If you go to a restaurant and place and order for a steak, but get lamb chops instead. Would you simply say that it's okay?

Why then, should you in any way compromise for your child? In schools, we are advised that parents should not sit in the sessions, as the chidlren may get too anxious, in our presence and fail to participate. Fair enough, but they never stated that parents were not allowed at the premises. The concern was for the child's benefit.

No parent would want to upset their children, but that are ways to get things done. Have a rapport with your child's teacher/ therapists. Establish gracious communication between the two of you. This was you both can optimize your effort as  work together, to help the child. I had informed my son's teacher, that I would like to observe my boy occasionally, to see his reactions. She understood my concerns and she positioned my boy with his back facing the door, as she taught. This arrangement allowed me to glance into the classroom through the glass window on the door. I never entered the classroom. The teacher had no problem, as I was not being an obstacle to her teaching. This way, I could also gauge how comfortable my son was, with the teacher. Body language tells a lot, my dear.

The other mums always asked me why I had special permission to go up to the classes, and why I did so. I didn't have any privileges they didn't, I just spoke my concerns and arranged it such. As for why I did, so, I did it to ensure my boy was in good hands. I was blessed to know that Ivan had a good teacher.

When Ivan started, he was simply doing table task in the classroom. The teacher felt that he needed to be comfortable enough to trust her, before they had activities outside the classroom. Some time went by and Ivan was included into the school assemble period. Where he would assemble with the rest of the school, to fulfill his patriotic duty of singing the National Anthem and the Pledge taking. His teacher and I would watch him with pride, as he stood through this.

Then one of the parents asked me, what arrangements I did for Ivan to be at assembly. She wondered, as her boy had been there six months prior to Ivan and was still not given that opportunity of inclusion. Her son was older, and was not a very violent boy either. He should have been given an opportunity to try this out.

I enlightened her, that this was totally, Ivan's teachers doing, not mine. So I advised the parent to check with her boy's teacher. The next day, the parent shocked me with her teacher's respond. "Your boy is not at assemble, cos it's not like he was going to learn anything, right?". The mum was hurt, and was heart-broken when she shared this remark with me.

I was furious, how could the teacher say that. Even if he wasn't going to learn anything, according to her, shouldn't he at least try it out? It wasn't like they were going to lose anything. I told the mum that she should stand up for her boy. There are so many things her boy could benefit, with this inclusion. I shared with her on the benefits of inclusion with the group. Then I equipped her with some child development jargon to use, when she met the teacher again.

The teacher got defensive, when the mum approached her (with a better understanding she now has), that he son should have this opportunity to be included at assembly. Seeming that she was showing concern, and using the jargon she used. The teacher agreed to include the boy into assembly.

That boy would have missed so many opportunities, should the his parents just accepted what the teachers said. Sometimes, the teachers may be busy, or they could have become complacent doing the same job for years. But children should never be at the losing end for what ever the reason. I was marked as the mum who was making waves, and soon became infamous, there. But I had no problems with my son's teacher and didn't bother about it.

It's all about advocating for your child. In order to do that, you first have to equip yourself, with as much information as you can, regarding your child's diagnosis. Talk to people and read up. Be polite when you approach professionals, your humidity can go a long way for your child. Be persistent, but sometimes, it may seem that you are a nuisance. I didn't mind the names, so long my son benefited. 

When I was trying to get Ivan into a school once, they told me to call back in a week's time to check for vacancies. I did and did so every week. I know they hated it. But it paid of after a couple of months. When I called, the supervisor told me, that they had just received a letter of withdrawal and was about to find a child to replace the withdrawal. My call helped my son get that place. But please be as polite as possible, when you want to be persistent. The teachers do know that with limited resources, we are all waiting for our turn. But we don't want them to deliberately miss our child, as we had been rude to them, over the hundreds of calls made.

So if you are a parent who is new to this, keep these pointers in mind.

• Always liase with the teachers, which ever way suits you both (communication books, emails, smses)
• Check on your child when you can without disturbing the class (only if your child is having a one to one session)
• Be polite to the professionals, they are helping your child
• Ask questions and give them some time to get back to you, gentle reminders should they forget
• It would not hurt to encourage them with gifts/ thank you cards (wink you know what I mean)

When you advocate for your child, you widen the horizon for his/her future, open doors of opportunities for them, challenge the system to improve itself and fight for your child's individuality. They deserve so much more, we give them our best, as we speak for them. And one day when we are no longer, our legacy lives on through them.

Is your boy mute?

Many of us, don't have a trouble holding a conversation with another. I definitely, don't. Since conversing comes, so easily for me, it took me a while to understand, how challenging it was for my boy, with autism.

My family and I frequent a diner, near home, regularly. One night, some time ago, something mind blogging happened. The four of us went in, as usual, ordered our dishes, and continued as usual. What was the usual? Lots of chatting. We would talk about our day, at work, things that were bothering us, decisions we had to make. Peter, Immanuel and I usually used dinner time to catch up on what's new in our lives. And during this time, Ivan would be busy humming, as he flips the pages of his favourite book.

Since Peter brought the boys to the restroom, I called for the bill. While I was signing the credit card slip, the waitress said this. "You have a nice family, but I notice every time you come in, that boy doesn't talk. Is he mute?" I was shocked. Oh my gosh! She must think that we are horrible parents, to ignore the mute child at our table. I explained to her that he was rather shy, and didn't really enjoy conversations.

Later, I shared this with Peter. It was a mind blogging moment. What were we doing? We were focusing on Immanuel, and his stories, trying to be as normal as any family was. But never realized that maybe, Ivan wanted to say something too. But Ivan was always so busy with his books, that he never joined in. Would he actually, want to be part of the conversation? Does, he even like to have a conversation? He never showed much interest for conversations, before.

I felt so bad, and ashamed that a stranger had to call me out on this. But I was glad she did, sometimes, we have to step out, to see the whole picture. Ever since that day, when ever we sit for dinner, even at home, we would try to direct a few simple questions at Ivan. Just to make him feel included in the family conversations.
Simple, questions like, "Do you like your pasta? Is it too spicy? Do you have school tomorrow? Where would you like to go after this?" Ivan is capable enough to answer these questions with ease, so conversing would not be so stressful for him.

For a child to hold a conversation many skills are required. Firstly, he has to be able to attend the information, by listening, which means he has to sit and focus. Then the mind has to process the information, resulting in the comprehension, of what is being said. Then the mind, has to assimilate the information, and produce an answer for what has been said. All these things take much effort and time for a child with autism to process.

Imagine you are talking to someone overseas, with a bad phone connection. You will find that when you talk, there is an echo, then a brief silence and the you hear the other person talking. It's not like a normal conversation you would have, if the person was standing in front of you. The processing of information in a autistic child's mind is similar. There is a lot of stalling, and filtering and processing and then downloading. So you may find that after you ask a question, the child takes about a minute to process and then answers you.

So what must you be aware of, when talking to them?

Ask simple, single domain questions only?
Are you hungry? Then wait.
What would you like to eat? Then wait.


DO NOT ask
Are you hungry? What would you like to eat? Hamburgers? Pizza? 
All these are too much to consolidate in one go.

DO NOT repeat the same question too many times. Ask once then wait, after half a minute, ask the same question again, then wait. If the child understands your question, you should get your answer in by a minute. Don't be quick to repeat yourself, as the child may think that you are asking another questions, and repeat the whole downloading process in his mind. Getting you both no where.

When giving instructions, do so similarly.
"Ivan, take of your shoes." Then wait, allow him to complete the action.
"Ivan place them on the shoe rack." Then wait, allow him to complete the action.
One step instructions are best to start with. In time you will not have to repeat everything. This is because, the child will learn to see the routine, first taking off the shoes, and then placing them on the shoe rack. Thus, the routine will aid the child into what is expected of him. As the child matures, gradually, increase the complexity of the questions asked or instructions given.

It takes time to lay the foundation, but in time you will find it worth the while.

Collectables

In line with the compilations of your child's documentations, here are other couple of things, you may want to add into the collections.

• art work done by your child, inclusive of date/ year
• pictures of Lego construction done by child, inclusive of date/ year
• pictures of your child achieving something special (like his first time using a pair of chopsticks)
• videos of child embarking of a remarkable journey

These collectable will go a long way, if you are a creative mum, you may even go one step further and enter the world of Scrap-booking. I tried it, It's awesome. A note of warning, once your enter the world of scrap-booking, there is no turning back... seriously, it's awesome.

credit

If you are in Singapore and are interested you may try out two places. Of course, there are other places, but I love the services provided here.

Made with Love

Venue: At Plaza Singapura

http://www.madewithlove.com.sg/

Krafters Paradise

Venue: At City Square Shopping Center

http://krafersparadise.blogspot.com/

Advocating for your child

It is a difficult time, for anyone, when autism strikes. You are overwhelmed, emotionally unstable and could possibly be physically weak. You have to move fast for your child's sake. Time is off the essence. You have to consider the micro and the macro all at the same time. As if you don't have enough on your plate, you also have to deal with the child who is affected and your family members, who are adjusting too.

You find yourself, drawn in all directions. I don't know about you, but I secretly wished that I could just disappear into another place like this...

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and Peter has promised me that someday, we will have a wonderful romantic vacation like this... someday.

Well, until that day comes, I still have to run the race with autism, chasing me. So advocating for your child, right. Who are the people you will encounter? There are the whole list of pediatricians, therapists, psychologists and the hundreds of medical professionals that come along the waiting time. Here in Singapore, I would like to think that the professionals, know what they are doing, due to the tight ship ran in the hospitals. (or so I hope)

I never had to trust the doctors for much actually, the only two times I was admitted at the hospital, was to have my babies. So I guess I never thought much, about how much I should trust them. I would say that my generation, was thought to respect authority, and most of us still do until today. My mind set changed, when my mummy instincts overpowered my reasoning. (when it came time for me to advocate for Ivan)

Upon the umpteen check ups I brought Ivan too, I came to realize one common denominator. That was the uncertainty, the medical professionals shared. None of them could commit to a certain diagnosis. Later, I came to realize that since Ivan was below the age of three, the professionals would not diagnosis him. They fear a misdiagnosis due to the age. On the medical point of view, they were being cautious. But how was this helping my boy or me? We were lost? Not knowing what to make out of all the 'Maybe's and 'It could be's.

It was a wild goose chase and I was exhausted and frustrated, was pretty sure Ivan was too. So in order not to go on a wild goose chase, here are a few pointers I would like to share with you. Hope it helps.

• Prepare a file

Ivan has a huge green file, that I have dedicated specially for him. It is an ever growing file. Every bit of documentation I have for him is in that file. And I mean everything, medical appointments, art classes certificates, dental appointments, school registration form, etc. Crazy you may think, but if you are a working mum, with more than one child, you are not going to remember every detail when asked. You may want to draw a time line to prepare yourself for questions at the therapist's. Further more, you will find yourself filling in a tremendous amount of forms, as the years go by. You won't be able to remember all the years, which milestone took place in. So trust me, even if you think its a bother, this is guranteed to make your life a little easier.

• Know what you want for your child

Every child is unique, they are special in their own way, with autism or otherwise. As parents, we know our children better than anyone else in the world. Thus, be practical, we all want to believe the best in our kids. But sometimes, understand that it's hard for them too. I would like to see Ivan as normal as possible, but at one time he could not even drink from a straw. I had to come down to his level to see what was more important for his success. One thing we have to keep in mind, is to enable our children to experience success in which ever little way they can. This feeling of success will empower them from within, getting them to feel good about themselves. That's what we want for them. Know your child, know his/her struggles and set goals they can achieve.

• Be realistic in your expectations from both your child/ therapist

Be realistic with achievable goals, they are not only for your child but for the therapist too. Don't expect miracles in a session. The first session is normally redundant, as it's not going to go any further than the introduction. I know of some professionals, who don't charge for the first session, as it's merely a warm up session. Some children, take more than one session to warm up. So again know your child. The therapists, would know certain techniques, that you don't, but even still, they cannot get your child to do what he/she doesn't want to. Give it time, reasonable time. Sit in when ever you can to observe the sessions. Gauge for yourself.

• Know how much you can spare financially

Sessions with the doctors, specialists/ therapist, or what ever they are called, are never cheap. I personally feel, that autism should be a rich man's disease. How in the world is a financially challenged family, going to provide for their child? The subsidies they claim to have are totally crap! If subsidies had a shelf life, then maybe some people may get help. Cause, then they have to dish them out before they expire.

To tell you a funny story, when Ivan first started Special School at ****, I met with a social worker for financial help. She studied our case files, and called me over for a chat. I went down with a lot of hope. Here's how it went. 

She explains to me that I had to take the total family income and divide it amongst the total family members there were. So since my hubby was the sole bread-winner then, we took his gross, government salary and divided it amongst the four of us. And OMG, each of us got more than S$500. So then she explains to me that, we don't qualify. I mentioned to her that his therapies cost a lot, plus we have school fees, etc. She so kindly gave me a solution. She told me that should I have another baby, then the ratio of distribution will decrease, then maybe I can apply. AH, yes, why didn't I think of that? How en-genius of a plan. So yes, don't place your hope up too high for subsidies. Try to place a budget aside for your child's medical/ classes/ therapies. Start early, that is key.

• Research the professional you are going to visit prior to the trip

I find that many Singaporeans nowadays are very diligent, even before going for a holiday, they have Googled all the spots and cost they need for it. Yes, we are blessed with great IT technologies, so easily available at our doorstep. So make use of them, read up on the therapist/ psychologist that you are about to visit. Get into Mummy Forums to find out more, from other parents out there. Be open-minded, listen by think for yourself.

• If possible try to get a second opinion

If you can afford it, I would recommend that you get a second opinion. If the diagnosis is similar, that is good. But should they be far apart, then something is not right.

• Be open to comments given

It's hard, I know. To tell you a secret, I pick therapists that make me feel better after the session. Yes, I know, it's horrible of me. But I have encountered therapy session, when I come out feeling like the worst mother in the world. I feel crushed, demoralized and hopeless. And that transcends into how I treat people around me. I feel so down and condemed, that I can't get myself to teach Ivan. I take a while to pick myself up, by then it's time for therapy again, and the cycle continues.

On the flip side, when I have a session with someone, who knows how to put her words well. I am able to take her constructive criticism well, and help Ivan. I even try harder, as I know that I am doing a good job and my best to help my boy. Should something be wrong, the therapist is there to guide me.  

So should you be a parent who is about to a professional for your child, I hope my pointers have helped you. Always remember, that no one else is going to love and cherish your child like you do. They deserve better, let's advocate for them, be their voice to make their life a better one.