Thursday, April 23, 2009

Phone hog

Little S is a phone hog... some of you may have already experienced this. Maybe you've called and some little innocent high pitched voiced answered, "hawo?" That's Little S for you. She pretends the remote, a magnet, a block, anything is a phone. But what she loves most is the real phone. Apparently she's even called out with my cel phone. I hope I still have minutes to make emergency calls.

The little baby is growing up just as she should be. It's great to have her take some focus off of the not-so-great issues we have to deal with. She walks around a lot faster and with a lot more confidence. Often she will show up somewhere without you knowing because she would be so quiet and quick.

She is still using her pre-talk babble to communicate. She is practicing, and day by day I can start making out phrases like "how are you?", "what's that?" "what's going on" (in Chinese), "Huxley cat". She can listen to my questions and answer them. And, yesterday I asked her something that I had never asked before. She just looked at me for about 3 seconds and attempted a reply. I think I was asking her where her hand was. It's simply amazing how a child acquires language and communication! This time is absolutely priceless, and I'm so very glad that I won't be sending her to daycare. I'm just hoping she won't be a telephone chatterbox when she's older.

Sick, sick, sick and searching for therapy

First it started with Little R. He missed nursery school all last week. Then Little S caught onto his sickness, and missed her toddler time this week. Now I'm not well. Alas, it shall all pass.

The last couple of weeks have been more than busy. We have to shuffle through paper work, call and find therapy service, interview people, call places for applications for funding, take care of runny noses, get up in the middle of the night several times... a circle of exhaustion. But, we did find a therapist.

Today, I gave two weeks notice to Little R's nursery school, where the staff has just been wonderful with Little R, that we will be withdrawing him so that he can receive intensive therapy. Little R will be undergoing applied behavioural analysis (ABA) or intensive behavioural intervention (IBI) starting early May. Apparently the beginning will tough because compliance needs to be established. I am looking forward to seeing results. I am looking forward to him saying things, telling me what he thinks, perhaps even saying "I love you" one day. But first thing is first, we start him off one skill at a time. The little guy is bright, but like the paediatrician said, he's just being held back by autism.

Today when taking a walk, Little R said "guys" and seemed to be looking at squirrel. Upon a broader observation, he was actually pointing out that a kite (sounds like "guys") was stuck in the tree! He was sharing information with me. This may seem very insignificant to other parents, but these things are very exciting for me.

Sunday, April 19, 2009

The language issue

Before I dive into my thoughts, I need to express that I am writing in the midst of deep anger. What I feel is what I feel; however, the reasons that make me feel this way may not be exactly as I perceive them right now. I just need to write about this, or else I will erupt and disintegrate whatever or whoever is close by (usually the innocent children).

My throat feels that it is a rupturing volcano of lava. I am forced in my everyday living to conform to the opinions of others for the "well-being" of my child. How dare anyone dictate how I should communicate with my flesh and blood! How dare anyone force me to kill a part of myself to my child, deny him of the family, the history, the culture that our language represents? To me right now, it feels like murder. Every time I open my mouth now to speak to my child, I am forced to change my natural rapport and communication to use English.

I've been communicating with Little R and S since the womb in "my" language. To change it now because of dogmatic views that only English should be used with Little R makes me want to roar in anguish and furry. How dare anyone want to extinguish the glimmer of communication that there is with Little in my language with him? When I want to naturally tell him to back away from the TV, I have to stop myself and switch to English. This is not because he would not respond if I told him in my language; it's because English is dominant here. My language is suppressed because it is viewed as inferior and an obstacle for "true" communication.

Someone suggested that I could teach "Chinese" to Little R once he's better. No one has explained to me in a way that I can understand how this could work. If he's "confused" now, how would he not be "confused" later?

Yes, I am bitter and acutely blunt in this post, but I need to diffuse the boiling fire within me. It's not good for the children; and it is difficult or impossible to focus objectively with such strong emotion.

This is what does not make sense to me about just stop using my language with Little R:

1) the removal of my language also implies the removal of my family who do not speak English, which implies the removal of a huge part of Little R's extended family, history and culture.

2) Little R does understand and use some words/expressions in my language to communicate, so why would one stop watering something that has rooted and shows life?

3) My intention before the children were born was to raise them with my language (and of course DH with his) so that they would have another language/culture other than English, as well give them an edge when they got older to learn other languages with more ease. Starting life with more than one language adds such a dimension to one's life.

4) I don't see that my language has to be terminated rather than compromised. Could we not just do the therapy (and also support the therapy) in English, but still use my language for things that are not yet touched in therapy, or with my family.

5) The more I don't use my language with Little R, the more likely he isn't going to respond to it later (when he's better) when I am "allowed" to use it again. Having said that I don't even know if I will be "allowed" to use it again with him.

6) My child might grow up to resent me for not continuing to use my language with him because of pressure from others. He might view me as a weak and irresponsible individual for not standing up enough for him in this area.

I hope that the people who want me to stop using my language with Little R don't think that I'm a push-over for conceding with their demands. However, I do not want to bicker over (and especially in front of) Little R's well-being. Everyone (who has spoken to me about this - except for another mom with an autistic child) thinks I'm wrong to use my language with him, that I'm confusing him and setting him aback for optimal learning. Unfortunately, it takes an exceptional person to withstand such social pressure to conform, even if the individual knows he/she is not wrong.

Again, I am writing in an emotional state (although, by this paragraph, I feel that the lava has settled somewhat), and what I perceive right now may not be as what others intend. At least I have my views written, and that is better than letting them explode into a million pieces that people would not be able to understand.

Tuesday, April 7, 2009

Official Diagnosis for Little R

Finally, we have on paper that Little R is in the ASD spectrum. This is a relief, at the same time also overwhelming. There was a lot of paper work done at the developmental paediatrician's office, and we'll be expecting to meet other social workers and therapists.

After a long discussion, answering the doctor's questions, she (the developmental paediatrician) said that she thought it was best to give him the diagnosis of autism today. She asked if we were okay with the diagnosis, and we did not disapprove it.

It's very disheartening to hear that while there are services available at no cost to families, that there are very long wait lists (three years). On one brochure from Autism Ontario, it states that on average a family with an autistic child will spend an additional $30,000 a year! Some people don't even get $30,000 a year as their income. Not only do we have to deal with the emotions of the disorder, we also have to deal with the financial strain.

We asked about biomedical treatments for autism. She said that they were not recommended and they were not proven to work. However, we have read so very many testimonies from parents who have "cured" or greatly improved the prognosis of their child through biomedical treatment. So, what do we believe? What is the best thing to do? Frankly, my faith in the government and the OHIP covered doctors is not very strong. I don't think that they intentionally want to bring harm to their citizens/patients, but I think that they are greatly influenced by wealthy pharmaceutical companies. (Okay, I won't get into politics.)

I am near exhaustion, a common state these days, and I need to go to bed. We're going to take things step by step.

Thank you for your moral support through this process. I do appreciate your emails and phone calls.

Little S is walking!

Our little girl is growing up. When Sister D started coming over to help with taking care of the kids two weeks ago, she said that she was going to make Little S walk by the time she was done.

Well, when we came back from the paediatrician's with Little R, Sister D showed us just that! DH quickly grabbed the video camera (luckily there was still 3 minutes left) to record her first real walking day. I walked in to the brightly lit kitchen to find everyone excited. Little S, with my open cel phone in hand, wiggled and she took stumbly baby steps toward me. Then she kept doing it in the living room, in the hallway, in her room, in my room, in Little R's room... and she kept talking on the cel phone (she loves pretend chat). Well, looks like this is the beginning of a whole new level of exploration for the curious kid. And alas, perhaps more toddler proofing ;)

Thursday, April 2, 2009

Questions About Natural Treatments for Autism

I don't want to sound like skeptic, but before throwing my son into any treatment and throwing money into that treatment, I really would like some questions answered first.

From what I have read, it seems that many children who have an ASD (Autistic Spectrum Disorder) are also plagued by other health issues such as digestion and bowel problems. There is a theory that vaccination shots are associated with the onset of autism, and it's the mercury in the vaccines that cause the neurological problem. As well, there is the environment factor: there are many toxins around and within us. For children with autism, it is theorised that these toxins must be purged from their system so that they can absorb the treatment (speech therapy, behavioural therapy) that they need.

I don't think that Little R has any digestion or immune system issues. I think that he is a healthy little preschooler who has difficulty using language and lives in his own little world. However, could be wrong.

First question: how do I find out (preferably without paying out a lot of money) if he has allergies, in tolerances, imbalances, toxin overload, etc.? If Little R indeed has a digestion problem, would it subtle enough for us not to notice?

Second question: for the children that were helped by biomedical treatment, were these children physically ill to begin with? Did they suffer from seizures? Did they all have obvious digestion problems?

Third question: out of the children who have tried biomedical treatment, what percentage saw significant improvement or even full recovery? How long does it take?

Fourth question: how much would a children need to see the biomedical professional before progress is seen? how much would a family need to pay to have a child recovered? This includes the fee for consultation, purchasing of vitamins/supplements, special food (like gluten and yeast free)?

Fifth question: do any of the testing or applications of the biomedical treatment have any risks or side-effects?

Sixth question: how does behavioural therapy fit into biomedical treatment?

So, I'm concerned with: which group of ASD children benefits from biomedical treatment? is it safe? How much am I looking to spend? How do I know my child will benefit from such a treatment?