Trust But Verify

Trust is not what it used to be. Time was you put your complete faith into whatever your government, your doctor, or your school told you and never thought to question it. Those days appear to be over due, in large part, to people in authority betraying our trust in a variety of ways. As a nation, we are not as naïve as we used to be; we have learned to question authority. We also have so much information literally at our fingertips that can be perused to keep us informed. Personally, I think that is a good thing.

For some people, this is a difficult new norm. When you have a child on the spectrum, however, it is a necessity to gather as much credible information as possible to keep you in the know. I have spoken to too many parents who were told by their pediatricians that the delays they were seeing in their child were not concerning. You might have heard, “all kids develop differently,” “Albert Einstein didn’t talk until he was five,” “you worry too much” or a variety of other platitudes meant to reassure you that all is well. However, you still had that nagging feeling in your gut telling you something is not right. That’s the time to trust your instincts, inform yourself, and maybe get a second opinion. Doctors do not always have all the answers. They may not have seen many patients with autism. You, on the other hand, live with this child 24/7 and see a lot more than your pediatrician can observe in one short visit. Trust but verify!

If your child has received an ASD diagnosis, you will be needing services either from TEIS (Tennessee Early Intervention Services) or through your local school, depending on their age. These could include speech/language therapy, occupational therapy, behavioral therapy or more. Don’t assume the school will provide these simply because someone told you so at your IEP meeting. Make sure they are written into your child’s Individualized Education Plan so that the school is required by law to provide them. Even then, check back periodically to ascertain that the IEP is being followed and these services are being provided. If there is a behavior plan in place (and there should be if behavior is an issue), make sure you know what’s in it and that it is written emphasizing positive, rather than negative, approaches. We often assume that once we have everything written down our work is over. Unfortunately, that’s not always the case. Trust but verify!

Just to clarify, I’m not saying you need to be one of “those parents” who are automatically suspicious of anything anyone tells you and can smell a “conspiracy” coming around every corner. It’s not conducive to a good outcome to go into every meeting expecting to be conned. Go into your meeting willing to listen to what is presented with an open mind and a positive attitude. However, if it seriously doesn’t jive with what you know to be true, speak up!

It is productive to build relationships with all the people who come in contact with your child, whether they are in the medical or educational field or elsewhere.  Assume that they have your child’s best interests at heart, but also know that they are human too, and invariably mistakes will be made and things overlooked. If you are an active participant in all parts of your child’s life, you will soon know which professionals are doing the best they can to provide the services and supports your child needs to succeed. Those are the people in whom you can put your complete trust. They’ve earned it. For all the rest, trust but verify!

If you do find you need to object to a certain plan of action, it helps if you have some facts to back up your gut instinct. Here are a couple of places you can get some good, reliable information: Autism TN’s bi-monthly orientations and monthly workshops (autismtn.org/education); STEP (Support and Training for Exceptional Parents) workshops (tnstep.org); and, for legal precedents, wrightslaw.com. We also have a list of advocates you can access to help you find your voice and make it heard. Remember, trust but verify that everyone is doing the job they are supposed to be doing!

Peace,

Carolyn

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