HI I am Autism mom living in Bangalore. I am organizing a parents support group meeting on 29th June 2014, Sunday 2:00pm to 4:30 pm. for further details please e mail me at email@example.com
Titas...this is for you...a long one.
Sorry for the delay in responding...work has been busy. Plus I saw that you had messaged Aanchal and figured that she would have given the information you seek.
Aanchal has always been gracious even when I butt in on threads directed at her (unknowingly, I'll admit), so here I'll add to whatever she has passed on to you. In all probability it is a repeat but I'll write it anyway:) This is something I wrote elsewhere but I think it applies to you and other moms who've just learned about their child's diagnosis.
How you advocate for your child is going to be more important than what all the professionals do for your child. How do you figure out what is right or wrong when you get contradictory messages? Mostly it comes down to learning about the condition and managing the professionals.
It would be nice to have a one stop treatment system but unfortunately it is a case of several kinds of treatments working together to help children with autism.
The most important (as per evidence based practices) are speech therapy, developmental OT and ABA.
In India there is a common misconception among parents that speech therapy is about speaking or talking alone. Actually, it is about language as a whole. Speech is one part of the language piece-the expressive part. You have the processing piece where the brain has to process the information thrown out at you (figuratively) as speech or print (reading). If your brain processes language correctly it leads to understanding-the receptive language piece. A child with autism (even if he is non-verbal) needs all three parts of language skills to be addressed. The child with autism has very different needs from a child who doesn't talk, say because of a tongue tie. There the child is unable to produce the speech sounds because of an actual impediment to use the tongue freely. A child with autism has more needs than that so when you meet a speech therapist ask questions about how he/she will target your child's language needs.
The speech therapist should also work on social skills-because social language or pragmatic language is part of the whole package:) Skills like taking turns, asking for help are part of the social skill set-even a child who is currently non verbal has to be taught to ask through gestures or other modes.
The first step is always an assessment-the speech therapist MUST do an initial language evaluation to get the baseline measure. Then the professional should EXPLAIN the following:
1) What skills the test measured
2) How your son attended during the sessions (test scores can be affected by many factors-even if the child is hungry)
3) How the skill deficits will impact his progress. (Think about not being able to do 2+2...what is the impact in practical life-how can you handle money? How about time management?) In this manner the therapist must explain why your child needs to learn certain skills. There is another advantage to this...if a therapist can explain these things, you can check on the net as well. Then you'll know if the therapist is really skilled in his/her job. After all we all want skilled professionals don't we?
4) You must get homework...yes you, the parent, must get homework. The therapist must explain to you how you must target the same skills that he/she is targeting in therapy. 30 or 45 minutes session will not do the trick for your child. You must work on those skills in many ways in many contexts throughout the day. When your child is older, the therapist will also have to guide the teachers on his needs. Children with autism need a lot of help with generalizing skills from one setting to another. So if a therapist doesn't give you the necessary work after every session beware! It doesn't take a lot of time...it is part of the job requirement. So address these requirements before your hire the services of a therapist.
5) The therapist must meet with you at least once in three months and review the progress...not testing again (that is usually done once every year) but like the PTA meetings in school. You as a parent are entitled to answers-remember no one is doing you a favor. You are paying for services and this progress report is part of the services.
The speech therapist is one of the most important persons in your child's life. So take time to find a skilled one.
6) Your job is to stay at the therapy centre and watch what happens and ask a 1001 questions. The biggest compliment you can get from a professional is that you are a pushy parent. I can tell you that we professionals LIKE pushy parents. We know your child will get somewhere:) Unless it is an emergency, don't drop your kid off at therapy and go shopping!
Developmental occupational therapist: You notice I say developmental? That's because you need someone trained to work with children, not OTs who work with adults (who may need OT after an accident). Children with autism usually have sensory processing difficulties-may be tactile defensiveness, oral sensitivities (wanting certain kinds of food alone), problems with personal space, difficulty with certain sound frequencies. The best person to work on these is an OT. Once again there must be an initial evaluation (which includes your input in the form of a questionnaire)...the initial eval tells the professional where the child's difficulties lie and how to progress to the next step. Just like the speech therapist, the OT must give you homework, explain the day's activities and responsibilities on work ethics are the same!
ABA is a very specific scientific method. It is highly specialized, just like any other specialist treatment it can be expensive. We often see parents struggle with the idea of paying for something which looks like what anyone can do. Progress is dependent on the skill of the trainer. In places where such services are not available, I know parents train themselves by reading up on the information to help their children. As a professional in a related field I wouldn't recommend any parent go to someone without proper certification. They may charge less, they may even be able to do the job well, but there is no way of knowing if the quality of services will be on par with what a certified professional (who has gone through an intensive training program) can do. At the same time, it is a quandary for middle class parents. The best you can do in these circumstances is to be a proactive parent and learn to ask the right questions.
Fact is, a child with disabilities has needs which require expensive treatments. This is one very good reason for parents to engage in advocacy groups and fight for legislation and financial support. Be vocal as a group, find support from the community of NT parents. There is a long fight ahead but that is no reason not to start.
There are other treatments which are gaining popularity...there is some evidence coming in about the GCFC diet. Parents will be able to help you with that.
Play is another important requirement for a child with autism is play...build up a nice play area and encourage the neighbourhood kids to drop in. Let your child have the opportunity to be in the same room or play side by side. Teach the other kids to involve him in their play. For this your play area must be really enticing, but it is worth having the kids interact with him. If they ask questions, be matter of fact in your explanations. If they make fun of him, don't get defensive. Instead ask "Why do you think that?" Or even "Do you think that it is ok to say something like that?" It is very important that your child spend time with NT (neurotypical) kids. Advocacy is a difficult thing because it means you have to push your instinctual responses back and act like it didn't bother you. But it is important to keep your child visible for his sake now, and for the future. That is the only way others will learn to accept him.
Also, check if your therapist turns off the cell phone while working with your kid. very important in the Indian context!
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