Thursday, May 6, 2010

Advocacy: Your Present Job, Your Child's Future Job

This post originally appeared in February 2010.

Today we had a terrific conversation on @thecoffeeklatch about being your child’s advocate and turning them into an advocate for themselves. The following is a summary of the discussion. It is a conglomeration of the wonderful thoughts and ideas produced by a group of tremendously supportive parents of special needs kids. Some of these ideas are mine, but not all. Please go to the search box on your twitter profile, and type in #tck to see the actual discussion of these topics.

There are several stages of development for advocacy. The one most people think of is being the advocate for your child. We embrace our parent-bear attitude and go in full force to protect our young. Now this is not a bad thing. But as I have written before you need to be methodical, practiced, and calm.

1. Know the law. Understand the IDEA, ADA and the state regulations. Know what is available in your school district for your child and/or what programs are available in your state. Understand the testing that can and should be done on your child’s behalf and the methods recommended by experts on how to deal with these issues.

2. Try to make friends with the teacher. You want the teacher as an ally.

3. Write the teacher a letter about your child. Make it positive while explaining their issues. Also use positive phrasing to describe idiosyncrasies. Think of the best way to describe an adult if they were applying for a job. Use those kinds of words.

4. Don’t forget to thank the teacher for the extra work they do. I usually bought an extra Christmas gift, but if your budget does not allow for that, a hand written note of thanks is always a lovely gesture, to recognize that the teacher does take extra time with your child.

5. I always bring some type of baked good, cookies, or brownies to an IEP meeting. It helps keep it civil and friendly even if there are some contentious issues. Sometimes it helps to cut the tension with a little friendliness. Don’t be afraid to make the first gesture.

6. Also don’t be afraid to bring support with you either in the form of therapists, doctors, advocates or even a friend to hold your hand.

7. Make sure the goals that are written are appropriate for your child and offer them growth.

8. Make sure the schools include self-advocacy goals for your child.

What is self-advocacy? Self-advocacy is teaching your child to have the ability to help themselves. It is the ability to make sure that they get what they need when they need it by themselves. Now, this is not going to happen when they are 6 years old, but it is a skill that needs to be taught to them continually throughout their education so they are able to take care of their own needs as independent adults. Self-advocacy skills include:

1. Understanding when they need to remove themselves from a situation because of sensory overload. What to do in that situation and where to go to calm down. Also they should be taught how to calm themselves as well.

2. They need to know how to approach the teacher to ask questions about work. They need to know how to ask the questions and when to ask the questions. They need to be able to differentiate between talking to their teachers and their peers. They need to understand how to use pragmatic speech and the tonal quality of their voice.

3. They need to learn how to keep their belongings and their assignments organized. They need to know how to hand in assignments, how to keep a calendar and how to when all else fails ask for extended time.

4. They should be taught that if they cannot make themselves clear the first time they ask a question it is important to try to reword the question, not just yell loudly at the teacher because the teacher did not understand the first time. (For that one the child usually does get detention eventually)

5. Your child needs to be able to ask for help, when it is needed and accept help when it is offered.

6. Your child should be taught how to differentiate between someone who wants to be their friend and someone who is a potential bully and what to do about it.

7. They need to learn the rules of behavior in and out of the classroom.

8. Make sure your child know who to turn to in case they get lost; who will help them in public and in a store situation and who to stay away from. (On the @thecoffeklatch wall on facebook several people have listed their favorite medical alert sites. Buy your child a bracelet, necklace or shoe tag. Put their name, diagnosis, who to contact in case of emergency, and medicines on the back. Also listed is a site for a tracking company for those whose children are runners and nonverbal. I had previously listed on the facebook page some sensory friendly websites as well.)

There are also self-advocacy skills that relate to the community at large.

1. They should be able to go into a grocery store, drugstore or any type of store. They should be able to pay for their items and return home without exposing themselves to potential hazards.

2. They should know how to safe guard their person and their wallet when they are in public. They should know how to use an ATM machine and keep a bank account

3. If they are not going to learn to drive they need to learn how to use public transportation. On that note, they also need to learn to cross the street. As I said during the conversation for some reason collegeman still forgets to look both ways. (Don’t ask)

4. They should be able to go into a restaurant, order, pay the bill and leave a tip

5. They should understand proper hygiene requirements.

6. They need to learn domestic chores and how to maintain a household (pay bills, clean, understand about money management/insurance/healthcare)

7. They should know how to interact with authority figures, be it the police, firepersons or EMTs.

Holy cow you say. This is so much. The truth is not really. These are merely the things that any person needs to know in order to become an independent adult. Self-advocacy is something everyone does all day long no matter who they are. The difference is that with our children, like with most things, need to be purposefully taught. It is not something they are going to pick up on their own. Also remember this is not something that they are going to have to know over night. Slow and steady wins the race and slow and steady your child will learn to be full independent self-advocating adults.

Until next time,