當我知道我的孩子患有自閉症時

Dez

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia?I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

Dez

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%? Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

Dez

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."

Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

Dez

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

Dez

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.

I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

Dez

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

Dez

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

Dez

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.

Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

Dez

10. Love me unconditionally. Banish thoughts like, "If he would just ...." and "Why can't she?." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you ?I am worth it.

Dez

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They may have had autism too.

siokae0422

我 的 孩 子 已 经 肯 定 了 是 自 闭 症 了 。 。 。 。 。 。

Dez

我 的 孩 子 已 经 肯 定 了 是 自 闭 症 了 。 。 。 。 。 。
siokae0422 发表于 18-4-2010 01:58 AM

不用伤心，不要气馁。。。这不是世纪末日！
我有说过，我的孩子比别人特殊，但并不是更坏、更失败，我的孩子只不过离完美更远一点。。。。

现在更需要给他更多的关怀和爱心。

加油！

nicolelam

回复 157# candy_lim78

我是ipoh人，所以不懂哪里有，不过，我叔仔帮我去修成林问孩子治疗的问题，你可以去看看。

nicolelam

回复 171# siokae0422

4月份的妈妈宝宝有报导自闭儿的，你可以去看看，那边有两个妈妈分享他们孩子的事。加油！

siokae0422

不用伤心，不要气馁。。。这不是世纪末日！
我有说过，我的孩子比别人特殊，但并不是更坏、更失败， ...
Dez 发表于 18-4-2010 02:28 AM

   

放 心 吧
我 并 没 有 气 馁
之 前 已 经 有 了 心 理 准 备 了
反 而 会 更 加 耐 性 地 对 待 我 孩 子
现 在 更 加 了 解 我 孩 子 了
我 会 更 加 做 足 爸 爸 的 责 任

khcho

Lz, 请问可以给我LOH GUAN LYE 的 SPEECH 和 OCCUPATIONAL THERAPHY
的联络电话和地址吗？
我有个朋友的孩子目前两岁半，还没开口说话，
他的父母急了，所以想要去鉴定看是不是mutism。
以便提早做治疗！谢谢

Dez

回复 176# khcho

我孩子是看：

Speech-Language Pathologists 是 Ms Ang Siau Thian
Occupational Therapy 是 Ms Heng

你试 call LOH GUAN LYE for appointment 看看 2266911

LohGuanLye SPECIALISTS CENTRE
                                238, Macalister Road, 10400 Penang, Malaysia.
                                19 & 21, Logan Road, 10400 Penang, Malaysia

Dez

放 心 吧
我 并 没 有 气 馁
之 前 已 经 有 了 心 理 准 备 了
反 而 会 更 加 耐 性 ...
siokae0422 发表于 18-4-2010 05:04 PM

就为我们这些二十四孝爸爸加油吧。。。。

siokae0422

我太平这边
一个月一次Occupational Therapy
speech therapy两个多月了都预期不到
政府医院来的
小地方只有政府医院有而已
看来我也要安排去loh guan lye做这两个therapy了
一个星期一两次都无所谓
医院这边照做，penang照去
希望可以对孩子好点
不想拖太久。。。。。。

虽然医院医生告诉我autism是不能上普通学校的
虽然我很希望我孩子可以读华小(马来西亚应该没有华文特殊学校吧)
但是只要孩子可以像普通人这样照顾自己我会很开心了

小梅菜

回复  khcho

我孩子是看：

Speech-Language Pathologists 是 Ms Ang Siau Thian
Occupational Ther ...
Dez 发表于 18-4-2010 09:25 PM

LZ,我要向你求救了，当我发现儿子自闭症已经太迟了，现在他已经9岁了，我带他去槟城的ONG SPECIALIST &COUNSELLING CENTRE看了4次，不过好像没改变，想说换一换，可以给我知道你带星星儿看医生的资料吗？我儿子有以下的症状，你觉得我应该给他看哪一个医生，有华人的吗？因为我英文比较差，看一次多少？我带儿子看的一次一小时RM120～

                     1.记忆力很好，他是属于数学天份高（所以读书方面我比较不担心)
                     2.常常做出古怪的行为，还会忽然尖叫（担心）
                     3.不懂危险，过马路不看车，捉蜜蜂，还把壁虎剪成4/5段（担心）
                     4.常常给老师说上课不专心，玩铅笔，翘椅子，挖鼻粪，最喜欢发梦（担心）不过都考第一名
                     5.不懂照顾自己，很肮脏，吃相很难看（最担心）连筷子都不会用，吃东西都一样，不转变。