Friday, September 3, 2010

Random musings

As I keep blog hopping,  I am constantly  amazed at the wisdom, courage and fortitude of parents who have been battling autism, in their own way, and passing on their experiences good and bad.  All of it can be overwhelming. Some of these blogs move you to tears. One such blog that needs mention is
                               Having handled a child with autism for 10 years, here are some thoughts I would like to share.
 For one you can never wish autism away. The complexity and the challenges only keep varying. The mother with a newly diagnosed child may want to know all about potty training, while I am out looking for hobbies that Ramam can pursue.  There are going to be challenges along the way.

Secondly, what works for your child be it therapy, or if you are thinking of medication has to be individualized to meet his requirements. When you adopt a particular teaching method, it does not mean you remain wedded to it to the extent of exclusion of checking out other therapies. It is all a trial and error method that works. We have tried sidha, ayurveda, homeopathy when it come s to medication ……..and in communication everything from PECS, communication folder, to VBA .For a non verbal child these have been crucial aids at some point of time.

Thirdly, you must cherish the child’s every achievement or milestone because after sometime they seem so common place. I remember one mother calling them “inch stones”.

Fourthly, I find it easier to handle a meltdown when I tell to myself it is autism that is acting up and not my son. Despite the so many challenges he faces in a day, Ramam remains cheerful and that is a lot. This is one such instance in his every day. Recently, his teacher sends me a note stating that he does not return to his class independently from the dining hall. He goes down to the basement. I wrote back asking if he is going to pick some lineups (that is acronym we have coined for the small objects he likes to pick up and line up). And so it was. I sometimes really wish to God he could explain himself and his actions.

Fifthly, it is very important to massage their ego and appreciate what they have achieved. In the long run, if as parents we look at ourselves more as facilitators who helped our child to give his best to everything he does. That can go a long way in helping him. The smaller things as keeping the environment  conducive to learning, ensuring he has his done his last piddle , so that he does not wet the bed, ensuring he is not constipated and more importantly remaining  cheerful in his presence. As they say God is in the details. It is not easy, but so it is.

Sixthly, I realize last eight years, I have been rushing Ramam through so many activities. It is important to interact at every single point of time. Today, I ask him if the temperature of the bath is ok. I wait for him to ask for the towel. Ask him to powder his face himself and then go about correcting it. Doing everything for your child, takes away many learning opportunities for him.

Seventhly, many a times they can also surprise you. When you think they are not listening, be rest assured they are hanging on to every word of yours. This makes it doubly important to be careful as to what you talk in their presence.

Eighthly, you are very important to them. Ramam is in the habit of getting on to my lap, pulling my cheeks, if I sit in a therapy along with him. More often than not I am told to leave the room. I am on my guard whenever a new therapist takes on and would like to observe the session. One day after the session got over, I howled at him in frustration. I am told to get out every time because of you. The next time, the therapist was about to ask me to leave, he opened the door and pushed me out before she could complete the sentence. It also goes to show they are also quite sensitive.

Ninthly, Taking care of one’s own health is very important; because it pays in the long run. By looking after yourself you are doing your child and family a favour.

Tenthly, I wish I could make this sound like Ten Commandments, but then I have exhausted all my points. It has been a loooooooong   post.
Here are some links that Gina  sent me.


Padma said...

Well analysed and written,
I fully agree with the statement that they hear and understand most of what we speak,have experienced it myself.
May GOD give you the strength and courage to keep going
take care....

Tara said...

I guess, calling this post 10 commandments is very very appropriate!
I specifically liked the point where you emphasized the need to take care of ones self. This rarely happens, when you are in a mad rush to make up with all the therapies and tantrums and ...

Just wish we could do it.... always

viji said...

yes,it has to be a very conscious decision............

troubled sign said...

Dear Viji,

I read some posts of yours and quite identified with you. I have a boy aged 7 who has low vision. and really life has taught me so much through my son. Makes me want to choke and cry though....

viji said...

Dear Ts,
Cliched as it may sound, probably we are the chosen ones.i have had my share of days of depression, embarrassment but then you bounce back. As you said we learn from them in many ways. My son is my hero. As a non verbal child life is extremely difficult for him but he finds reasons to be happy. isn't that wonderful.Cheer up!

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