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As discussed below, I have no formal training in treating children with autism or developmental delays. All the advice, suggestions and tips on this website are offered strictly in my capacity as a parent of a disabled child --- without any kind of warranty or guarantee --- but with my best wishes that your child will progress as quickly as possible to reach their full potential. It is my hope that you will read through this website to become familiar with some of the issues and techniques I raise and then discuss them with the professionals involved in your child's care to get guidance and advice that is specific for your child.
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All About Me
My life can be divided into two neat packages. The life I led before my daughter was diagnosed with Pdd-nos, and the life I lead now. Pre-October 2003, I grew up in Montreal, Canada, moved to the US to attend Columbia Law School, got married and had two beautiful girls. Post October 2003, I have been on an all encompassing mission to help my child recover, build and cherish whatever happy moments I can along the way for my family, and to help other families similarly situated.
I have read countless books about the treatment of autism, and have also attended many lectures, seminars and conferences. Our family has worked with and been coached by many talented and dedicated doctors, teachers, ABA therapists, speech therapists, physical and occupational therapists, and psychologists. To date, we have not engaged in any biomedical or alternative treatments for our daughter. However, I certainly wouldn't rule any of these out for the future.
At 20 months, my daughter didn't say one word. Her receptive and expressive language were roughly at the level of a 9 month old. She did not have good eye contact, and was happy to engage in solitary play all day long. As of April 2009, at 7 years, 5 months old, her receptive and expressive language are still delayed, but she is doing great. She attends a language and learning disabilites class in a public school with some time in a mainstream classroom. She is connected, happy and has friends. A lay person meeting her now for the first time would notice she has language issues, but autism would not come to mind. Her evolution has been nothing short of miraculous. We hope and pray for the same success for all children with developmental disabilities, but have learned that hard work (or work disguised as play) certainly helps move things along.
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My Advice to You
Here are some thoughts I want to share based on my experiences:
(1) Special Education Law: There is no real enforcement of special education law. Although I would love to fight this battle, my best advice is to find people who are competent and truly care about helping children, and to entrust your child to them. You cannot force people to "do the right thing." If they are not capable, or not committed in their heart to do the best job possible for each child, then they simply will not do a good (enough) job.
(2) All Therapists are not Created Equally: Having a degree does not ensure that someone is qualified, and not having a degree does not mean that someone is not qualified (some people just have a natural gift for working with our children). Parents must learn what each therapist is supposed to be doing and monitor the intervention to make sure they are doing an effective job.
(3) Sometimes it's the Therapist and not the Methodology that Matters: Although I am a firm believer in Applied Behavior Analysis, in selecting a therapist for an early learner, I would rank the ability of the therapist (to engage my child and deliver progress on stated goals) ahead of the type of therapy they are doing (ABA, Floortime, Speech, Occupational Therapy). In practice, many types of therapy may overlap, and I believe it's the person delivering the services, and the intensity of the intervention, that can make the difference in some cases.
(4) Intensity and Generalization are Critical: If you want the best result for your child, you must infuse learning and generalization into your daily routine so that it becomes automatic. At least for the first couple of years, you must immerse yourself in learning about the different kinds of therapy available and how to do them with your child. Take therapy/school seriously. Do not miss a session for any reason other than illness.
(5) It All Starts With Evaluations: Evaluations are critical because they help determine the goals and objectives your child will need to work on, and also measure the progress they make towards those goals. You must understand these evaluations, the different components, the bell curve, etc. You also need to be sure that all of the relevant assessments are being done and that no important area has been left out. As you consent to the evaluations being done, keep track of the names and research them on the Internet or at a local library. Ask your school district or EI provider to see the test protocol.
You cannot rely on a public early intervention system or school district to tell you all of your child's needs since their interests (saving money) are not always alligned with yours (helping your child to the maximum extent possible). If you can afford it, I highly recommend paying for your own private evaluations (especially when your child is very young) so you can have an unbiased opinion of a therapist or doctor tell you what your child truly needs.
(6) Be Proactive in Your Child's Education: Be involved, ask questions. If you communicate your concerns or questions in a calm and knowledgeable manner, you will be perceived as a team player, not a complainer. Don't assume that even the most qualified and well meaning professionals know your child better than you do. His/her teachers and therapists are thinking about lots of children at once. You can be the expert about your own child and learn what is best for them.
(7) Make it Fun: Life is short. No matter what challenges you face, try your best to make it (fake it) fun. I started off faking fun to get my children to engage in activities that I thought would be educational. However, somewhere along the way, all that faking sunk in and I truly started to enjoy myself. Having a child with a disability has freed me in a way. I no longer stand on formalities with people and do things that I don't want to. I have no time for phony friends. I can walk around in torn jeans and look silly as long as my girls are having fun and learning.
---- Renee
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