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...
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.
No comments:
Post a Comment