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.

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.

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...

credit

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.