Learning the Language of Special Needs
Author: Lisa Simmons

Your child has just been diagnosed with a disabling condition. Suddenly you are surrounded by professionals. Usually they are:



Using words so long they give you a headache

Wanting permission to do a test you aren't familiar with or

Asking you choose between options you don't fully understand

Are you overwhelmed yet? Receiving a diagnosis is almost always a double-edged sword. Part of you is relieved to finally have a name for what you are dealing with, but another part of you is grieving. Even if you knew in your heart something wasn't right --hearing your fears confirmed is almost always traumatic.

Now you have a choice to make -- should you simply follow their lead and move in whatever direction the nearest expert points you OR should you take the time to learn about this condition and develop your own opinions. The first choice may be easier in the beginning when you are feeling stressed, anxious, and exhausted, but in the long run I believe you will be happier with option #2. Give me a couple minutes and I'll try to tell you why.

First of all, this has nothing to do with intelligence. You are facing an area you have never been exposed to and your lack of knowledge is all about time not ability.

Why do you need this information?

#1 - To make you a better partner in your child's care.

When you understand your child's condition you will be a more effective partner for every doctor, therapist, and case management specialist that you come in contact with. No one knows your child better than you do or has as much access as you do. If anyone is in a position to see subtle changes or identify potential problems -- it's you. But only if you know what to look for and what questions to ask. That "know how" comes from educating yourself. Can't you just learn from the doctors and therapists? No. You will learn a lot from good professionals, but few will have the time to fully educate you about your child's condition. And even if they were willing to sit with you for hours, you couldn't absorb it all at once. You need to learn at a pace that is comfortable for you and to have the control to focus on areas that are high on your concern list. Even if it takes time and effort you don't feel you have to give. It's that important.

#2 - To protect your child.

99.9% of all healthcare and social service professionals are wonderful, caring individuals who want to do everything they can to support you and help your child. Having said that, you need to be aware that occasionally you may cross the path of someone who is too overworked, too stressed, or too worried about budget concerns to put your child's need ahead of everything else. If someone like this doesn't tell you all the options available, will it hurt your child's progress toward independence? It's hard to say for sure. The impact might only be minor. Or it could be extremely significant. What if that person decides that assistive technology is too expensive and your child never learns to communicate independently. If you know the available options you are prepared to say, "I think there are some other options we need to discuss".

#3 - To make it easier to live with yourself.

Many parents have "closet fears". That somehow, something they did (or didn't do) caused their child's condition. It can eat away at your sense of security as a parent and if you feel your spouse did (or didn't do) something critical then it can eat away at the foundation of your marriage. Factual information is the only way to end this internal debate and put it behind you. Raising a child with special needs is extremely hard on marriages and the last thing you need is an additional (unfounded) stressor to complicate the situation.

#4 - To connect you to a larger community

Learning the language of special needs doesn't have to be an added burden. In fact, it can turn out to be a way of finding a community of personal support that will help you through many difficult days and situations. As you research your child's condition you are likely to encounter other parents, support groups, discussion lists, websites, and information centers that are created specifically to help parents raising children with special needs. By drawing on these sources of information and support you can become the kind of parent you always wanted to be -- knowledgeable, secure, and prepared to love and care for your special child.

TIP: If you're ready to start learning, don't go it alone. Look for a community of support like Ideal Lives where you can find resources related to your child's diagnosis; recommended "parent guide books" written in plain English; acronym glossarys to figure out all the jargon; and a wonderful community of supportive parents who've been where you are.

© 2004 Lisa Simmons.






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Lisa Simmons is the director of the Ideal Lives Advocacy and Inclusion Center, an online community of support for parents of children with special needs at http://www.ideallives.com


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