Shut Up! You Don’t Have A Clue (My Post in Support of Autism Awareness)

“Let me take a minute to say that if you are reading this and have never dealt with this, don’t even try to make assumptions. One of the most unfortunate things for the parents that are working to help their children through this is the criticism and uninformed suggestions of those who don’t have a clue!” Pam Baker of Pam Baker of The Village Stream worded this perfectly.

This will be the first time I come out in the open and discuss freely my personal experience about autism. It was only my close friends and relatives who knew about Tasha’s situation, I refuse, and probably won’t admit but until now I am still in denial that my daughter is autistic. Well, I was right because the last one who diagnosed her said she got very mild autism. This is good in a way, to speak of than being diagnosed as completely autistic.

My emotions was a mix of rage, confusion, sadness, and fear the first time I heard a doctor said my daughter could be autistic. I was totally devastated. How could this be when she is a physically healthy perfect looking baby?

Like anyone who is completely clueless and have shallow understanding of this difficulty, I pictured an autistic as someone with obvious physical defect that of which is manifested with someone having Down syndrome. I was ignorant and so my immediate reaction was to get furious and decided never to go visit that doctor again ever, especially with the care for my daughter. (People with autism spectrum disorders (ASD) have difficulties with communication, behavior and/or social interaction.)

It was my mom who told me what the doctor have said. My mom was the one who took care of my daughter when I am away from work. Being a single mother, I have no choice but to live with my parents so that my daughter will have someone I trusted to look out for her. I had 4 nannies already and none of them lasted, some just went to their homes for a short vacation but never came back. Finding a good and loyal child care is very difficult these days, so my best option was to move back with my parents.

My mother brought Tasha to our family doctor because she was feverish that time and being old (my mom is 71 now) and had completely forgotten how to manage a feverish child so she just went to the doctor who is just a block away from our home. While giving prescription to treat my daughters fever, my mom said “I think your grandchild is autistic, maybe you should take her to a specialist.”

What an insensitive fool, my ears rang as my mom told me this. Since then I didn’t allow my mom to bring my daughter to that doctor again ever.

***
Tasha was and is a real smart child. Before she turned a year old she could already do so many things. Her first step (with no support at all) was at age 1 but at 6 months she already have her first baby tooth. She was very good at getting the perfect tune of a song, although not being able to sing the words, she can babble in-tune to the song of Mandy Moore’s Only Hope, the Alphabet Song, and Queens We Will Rock You, her all time favorite. She loves to “read” books and magazines. She can count one to ten but not saying the words perfectly but she can count with her fingers. She has this mantra, the words she can perfectly say “Always Happy”. She is perfect in all aspects, she was a cheerful baby.

After that doctor branding my daughter autistic, family members, especially my mom and sister became a real bugger. I don’t believe in hurrying things up, everything has their own time and phase. What works for the other doesn’t necessarily mean it will work for another. But they are all “troubled” because Tasha still can’t talk or at least use 3 sentenced words at the age of two and they are bothered that Tasha doesn’t seems to respond when being called. It appears instead of progressing she regressed in some areas.

I really hate the notion of doing things for the sake of satisfying the people’s expectations but just to quiet them down I brought my daughter to a specialist at the Children’s Hospital in Quezon City. The doctor didn’t see anything wrong but suggested to my mom to be less tolerant of her behavior. My mother spoils my daughter so much, just hearing Tasha’s little cry (that to me is obviously she do to get attention or get what she wants) my mother comes to the rescue. The doctor said she might just have behavioral problems because of the way she is being cared for so that can be easily addressed by discipline. However, to ease the worry about probably a hearing impairment she recommended us for a BAER test at the UST Hospital in Manila. Thankfully after an hour or so testing the result came and she got perfect hearing, but like the first doctor we went to she suggested behavior modification classes to tame her spoiled ways.

Getting the result I went back to the Children’s Hospital and she referred us again to a child specialist in FEU Hospital in Quezon City. Tasha was recommended by this doctor for therapy that included occupational therapy, speech therapy and behavior modification and after a couple weeks to go back to her again to see what else we can do and make another diagnosis for her.

We were sent to the Autistic Society of the Philippines in Quezon City. I was a bit confused being sent to this place but for my daughters sake we went. I saw different types of kids, some are already teen-agers too, the place looks promising and the people are friendly. No judging looks all helpful and understands each others situation. I was glad to be there.

My mom was with us the first two sessions, but she hated the place she said. So the next couple of weeks I went alone juggling work to home I was getting exhausted and financially drained. Therapy sessions are not that cheap. Not mentioning the travel hours me and my daughter have to take to go the place. (The problem here in the Philippines is there are few resources and places to go to available for special children and treatment.)

What’s worst was, despite Tasha making improvements during her therapy sessions. At home would be different because mom would be treating her just the same. My mom’s reasoning was being old and a grandmother, she will care for her the way she want. Yes she is stubborn, but I don’t blame her.

After the couple of therapy recommended, we went back to the original doctor that requested for this and she said all my daughter needs is guidance and she is just delayed. I was relieved, very much. I already know this about my daughter, I went to ask for financial support from my daughters biological dad but all I got was “I am sorry I can’t help, I am a charity case right now. But don’t be so worried about Tasha’s condition my other daughter was like her before but when she turned 7 she spoke perfectly”. Duh! My family thought I was not doing anything, well I don’t tell them every move I make for sure (but this is irrelevant, he is irrelevant, so nothing more to say, hah!)

Anyway, Tasha turned 6 last January, I see lots of improvement on her, me being more at home with her now than ever for 9 months now since I decided to be a work-at-home mom now after the tiring, but fun and rewarding work during the 2007 election. My mom and I would have ugly fights with the way she interrupt with the way I discipline Tasha. I don’t treat her as someone different, I treat Tasha like a normal child. I care less if my mom despise me with this but that’s the way it has to be or my daughter will have a hard time dealing with h
er life in the future. It’s a frightening thought really.

Having a less “normal” child, I would still be defensive with other people. If looks could only kill, I would have killed a handful or more. I hate the way they look at my daughter with their judging looks. You don’t effing understand so shut up. Sometimes we would be in an FX (public cab transport) and some would stare at my daughter like thinking or asking. Sometimes, I would break the ice and tell them, she is a little different than normal. They would be “nice” by saying “Oh, she doesn’t look like she is different at all.” Oh yeah? Then why the weird look on your face?

Being a mother, I want to be protect my child from all types of harm and bad criticism. I want to explain to the world what they don’t know especially to people who give those kinds of looks to my child or any child having similar situation like Tasha, but it will be useless since they are ignorant. It’s so great to find a blogging community about these. Thanks to Pam Baker of The Village Stream and to Genevieve Hinson of Momolouge for opening the doors for me to learn more and come out in the open. I realize I am not alone.

Honestly, I blame myself for what my daughter has become because I was not always home for her during her first 5 years because I need to work. I was ashamed to come out in the open, but now I am not and I’m learning more about this disorder and there is nothing to be ashamed of. (The kind of shame I have is not because my child is different but because I lack in many areas as her mother to cater to her needs. I will never ever be ashamed of my daughter, she is my precious)


Share Your Thoughts Here

Here's something else you can read

22 Comments

  1. Hi Earth,
    I can understand where you are coming from in trying to protect your daughter against people who do not understand yet would not hesitate before passing on an ill-informed judgment. We mothers are a rare breed, fiercer than the fiercest beast when it comes to our children. Tasha is obviously such a gift to you and she is lucky to have a mother like you 🙂

  2. You are a wonderful mother and don’t you dare think anything less of your self ever. You love your daughter just as she is. You will do everything you can for her but most of all you will be immune to the negative energy from other people. Negative begets negative. Focus on what’s positive. Love to you and yours,
    TT

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.