Tuesday, February 9, 2010

When Should We Tell?


I have been promoting "telling your story" but with the caveat that not everyone is ready or comfortable doing so. In my professional world of special education I am particularly dedicated to preparing and supporting students with disabilities for life after high school. Reducing the horrific number of adolescents with emotional and behavioral disorders that drop out of high school is a top priority (more than 50% drop out!). Making sure that young people leave their high school with not only the skills to go on to training or college or employment but know how to find services and support is a goal. This is all part of "transition services" that begins by at least age 16 for students in special education. A really important piece of this process is for these young people to develop the skills to advocate for themselves. This skill is based upon self-determination which in turn is based upon self-awareness and self-knowledge. This means that kids need to know about themselves. They need to know what they do well, where they have interests and preferences, and what is difficult for them. Eventually they need to know about their disability. Many parents are very uncomfortable with this and likely worry through the night about what a "diagnosis" might mean to their child.

Telling your story is so much easier if you can start from your strengths and the things that you are good at. I have this crazy goal that every child will eventually run their own "meetings" beginning in middle or high school and into adulthood. Isn't that a sign of power....running your own meetings? These might be IEP (individualized education program) meetings, meetings with a guidance counselor, meetings with a psychologist, meetings with a counselor at a college or meetings with a job coach or an employer. Even if the young woman or man is not able to manage all of the meeting or the details she or he should definately be there. This means that we need to start early helping our children and students "tell their story". I have been in some really uncomfortable situations when a parent does not want their child to know that he or she has a "disability". There are ways to make this easier and actually empowering to the student. Here are my personal tips:

Begin with strengths and interests. What do you do well? What do you like to do? What do other people tell you that you do really well? (Me: big picture stuff, good ideas, language, reading, writing, speaking, empathy)

How do you best learn something difficult? (Me: quiet, calm environment, sour gummy bears, coffee)

When is it difficult for you to learn? (Me: tired, overwhelmed, interrupted)

What is difficult for you to learn or do? (Me: find my way out of a paper bag...or around a city, or in a hotel, or from my office to the Dean's office.....)

What are barriers for you and what help do you need? (Me: directionally challenged. I inherited it from my Mom. I can't reverse. GPS? Written directions.)

Discussion of long and short range goals should be part of this process with opportunity to figure out how to address the barriers or limitations. If there is a "diagnosis" in all of this I personally believe that it needs to be discussed as developmentally approriate and age-appropriate. I had a friend whose daughter had intellectual disabilities. When she was about 8 years old she asked her mom what "retard" meant. Her mom told her that it meant "slow". The daughter said that the kids had called her a "retard". After their discussion the daughter told the kids and the teacher the next day, "Retard means slow and sometimes I do think slow but I can learn thngs. It isn't nice to say to me. I prefer intellectual disabilities." Each family needs to decide how to approach this but it needs to be approached. I tested a man once that had learning disabilities and for all of his life (he was mid-thirties) he did not know what that meant or how to explain why he couldn't read or write very well but was well spoken and had above average problem solving skills. The explanation and his understanding of his learning disability was such a relief for him and he said he finally understood that he wasn't "stupid". So many people had told him he wasn't trying. Kind of like depression. With a diagnosis and an understanding it can be managed. Without either perhaps one should just "pull yourself up by the bootstraps".

Once a person leaves high school there is no more free lunch. If you need help finding or keeping a job because of your disability, including mental health conditions, you need to find the agencies that offer such services, prove that you indeed have a disability and be willing to keep asking questions, making phone calls and filling out paperwork. If you are unable to do that it is more than okay to have an advocate help you but you must either give them permission to do so or they must seek guardianship. Everyone has a story. Understanding our stories make is possible to share it when appropriate and necessary. Our stories should provide us with power.

15 comments:

Elizabeth said...

This is such an excellent, informative post! This week I had my boys' parent/teacher conferences. They both attend a local charter school that has a constructivist philosophy and both basically had to "lead" the conference. They were guided by their teacher, but it was so amazing to see them define their strengths and weaknesses, goals and expectations. And they're only eight and eleven years old! I'm sure that this attitude transfers equally to those with special needs as an important and empowering thing.

Jen said...

This is great Cinda, I hadn't thought that far ahead yet but I won't forget when the times comes. My eldest child knows about my toddlers autism, we explained that he is shy and can't talk as we felt this was an age appropriate explanation. He also knows it is called autism. I hadn't thought about when we would tell our toddler, he is far too young yet but having read your post I feel he should know by the time he begins school at 5 years old. Very valuable insight and information, thank you:) Jen.

Aviva Jaye said...

Excellent post! I wholeheartedly agree with you. Thank you for sayiing it so clearly. =)

froggy said...

I have a friend whose son is attempting to join the work force through a Goodwill program. It was very rough at first and just the simplest things would have made it so much easier.

Corrie Howe said...

When I was a single mom and my son started asking about "a daddy" a good friend and pastor who had four children himself, told me, "Kids will ask questions when they are ready. Answer the question they ask, no more no less. When they are ready, they ask more."

It worked for my oldest son and it worked for Jonathan as well. This year he started asking questions. Apparently the teacher was reading a book about a child with ADHD and Jonathan recognized the same behaviors in himself.

Meg said...

My son is at the point where he's almost proud of some of his issues (but he's a bit of an outgoing character so I think he likes the attention it gets him just as much as the understanding :) He readily and proudly tells people now that he's dyslexic and ADHD. The bipolar thing we hold out on for now. He can decide when and where he tells for himself when he's older because as much as it might help him to tell people it can also hinder him as well and limit his options later in life (no military, no police jobs, etc.). With that we don't have bp in his school records either. We just work around it.

Nancy C said...

When I was teaching, I worked hard with my team to set up a student-led conference. Not only does it provide an opportunity for kids to know their respective strengths and areas for growth, but it puts the solution in their laps.

Unfortunately, some of my team members did not want to let go of the power and the conferences didn't take off. It was very frustrating.

Tanya @ TeenAutism said...

Cinda, thank you so much for this, and for everything you do. In six months Nigel will be 16, so it's time to start his transitional planning. I'm a wreck just thinking about it! But with caring professionals like you out there, I feel like we'll be okay.

jazzygal said...

Great post Cinda! I have recently written a post about labels and whether to reveal them or not...I was thinking ahead and acknowledging that my son is getting to an age where he should have input into this. So I really like your idea of the children running their own meetings, when they're old enough! They should have a say.

I enjoyed this post, thank you! xx jazzy

mombipolar613 said...

Thank you for your blog. I ahve a 17yo with bipolar. I was reading your entires and it was like I was reading things I wrote. It is a difficult journey. Thanks for sharing this with other parents going through this.

mombipolar613 said...

Our story is at http://www.mombipolar613.blogspot.com

Accidental Expert said...

Great post. Gives me a lot to think about as my two get older.

Gregory Montgomery, Jr. said...

Good stuff, Cinda. i'm working on a human capital evaluation testing model. If you want a reference think www.ponderaadvisors.com on steroids. I'm going to do this. Help them peel the onion. Look into the rabbit hole...... Dr Fran Pirozzolo and I will be evaluating high school, college and professional talent through our testing model. This will indirectly(wink wink) give parents the answers to the test(human currency) in order to communicate with their children. Brilliance - GHM

Anonymous said...

Your wisdom and sensitivity are conveyed with the compassion and insight that are so very rarely exposed to those in need of such. Indeed, our society needs to be imprinted with your character and intelligence. For what it is worth, you have made a sincere and impressive impact on my two daughters who do not seem to suffer from any mediacal disorders, but rather who are afflicted with the desire to make a difference for those who are. Thank you for being who you are!

Megan said...

I have to tell you that my mom called me yesterday, hysterical, telling me that we just had to commit Caroline to a mental institution, that she was sick beyond help, that we are too stressed out caring for her, that I was going to lose my mind, etc. I stayed calm and validated her feelings (concern for my health) but also just said that she is nowhere near being that sick, and that her greatest chances for success in being raised by us in our family, not in some cold place. My mom struggles with depression and refuses to take ADs. I told her she didn't have to read my blog if it upset her too much. I wish my Mom were a little saner and not so proud. She is mad at God, mad at the world that she has three grandchildren with austism, one with bipolar disorder, and several with severe ADHD. I don't look to her for any kind of support emotionally and never have. But I have lots of friends and dear sisters.