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Success Stories >> Taylor’s Story

Taylors Photo

Taylor is a fun-loving 18-year-old who participates in ROTC and a hip-hop choir. She especially enjoys her history and childcare classes in school, where she has made the honor roll in spite of her autism. She hopes to work in childcare once her education is complete.

A Talk with Taylor's Mother, Pam—

How did Taylor's disability emerge?

A lot of autistic kids are introverted and don't like crowds, but I helped her build up tolerances because I'm a people person and really outgoing: I like concerts, shows, festivals. We started her early and worked our way up to it, and now she's running around with all the other kids. She didn't actually get diagnosed until four years ago, when she was 14. She was highly functioning, and everybody missed it.

She was in Special Ed but on the Honor Roll, so something was wrong. I asked for her to have inclusive classes, but they hemmed and hawed. The big fight was in Middle School. Puberty arrived, hormones kicked in, and she started exhibiting behavior. The school said she's fine here, but you've got a problem with your parenting. I told her to just be herself, and there were some incidents at school. Eventually, her teacher suggested she be evaluated for autism. She had high-functioning autism with Asberger's tendencies. That was the first time I had heard the words.

How has her schooling been affected?

I kept her back a year. Since it affected her academics, I wanted them to do more testing and evaluation. I had some testing done on my own and brought the results back to the school, and they did some other evaluations for autism and assistive technology. She had problems writing, and I thought it would help if she had something she could carry around and type on, which they called an electric writer. When she was younger, she had problems with eye coordination. When she had trouble with a word, I had her spell it out, so she became a very good speller. She got a Franklin speller that can pronounce a word she types in, tell the part of speech, define it, and use it in a sentence.

I thought it would really increase her literacy, but I had to fight to get her inclusive in school because she was inclusive everywhere else. I ended up hiring Maryland Coalition for Inclusive Education; their advocates are educational attorneys. We still want the safety net because of her anxiety—she needs a safe place to go to if she needs to chill. But she has added more inclusive classes every year since then. She's Honor Roll right now, and next year she wants four out of six to be inclusive. We found out just last year that she is an auditory learner, and made some adjustments in her curriculum. Had she been diagnosed five or ten years ago, where would she be? Things would have been a lot different.

Her teacher worked very hard with me to help her be comfortable at school. We worked on a transition plan and a behavior plan. She has done so well this year she hasn't had any meltdowns in the classroom and hasn't had to use her chill-out spot. She has some uneasiness but no panic attacks; she has managed herself very well. She's even in a youth choir and doesn't have any problem.

She'll probably be at the school until she's 21, taking academics and childcare, and we'll be looking for an internship and getting her ready for transition. She is on a certificate track but is in a tutoring program, so we'll see. Initially, I wanted her on the diploma track, but with her anxiety, it's not worth it. She's got a full life now and is doing well. She does volunteer work. There are four colleges in the area she can get into even with just a certificate. And she may get certified in child care without getting a degree.

How about social development?

She does a lot of things without me now, and I'm so proud. I love it that she‘s growing like that. But you need friends to do some things with, and she doesn't have that right now. They don't expect enough from her, and they're missing out. The community has definitely helped Taylor and me. It started with the inclusion department at Parks and Recreation. We started with one-on-one and a shadow and worked our way up to her not really needing anybody. The Girl Scouts helped too and her youth group. They embraced her. So when people have problems with her disability, she's like, "Hey, that's your problem. What's wrong with you?"

What part has advocacy played in her success?

I'm always looking for resources, and I go where the resources are. We just finished a phenomenal program given by the Arc of Northern Virginia—Creating Your Family Mission Plan, Critical School to Community Transition, Planning for Youth with Disabilities. The youth would go to one part of the building, and the parents or caregivers would go to another. They told us they had learned you have to tell people how to treat you; you have to be your own advocate. You tell them about your disability, and then you tell them how you want to be treated. Self-advocacy is very important and helpful. Dan Habib, the producer of Including Samuel, was in Bethesda in January 2010 and put out a search for youth who wanted to learn about advocacy and self-advocacy. Taylor was invited to join a retreat. I went with her because she didn't have the friendship piece. That upset her, but we worked through it and learned a lot. We not protesting anything or trying to change the world, but we're on the front line living it. She has been asked to speak at the Autism Summer Institute at the University of New Hampshire. The program is "Everybody reads, everybody writes, everybody has something to say." She has sung in front of large crowds, but not spoken. We are going to some Toastmasters meetings to help her get ready.

How are you approaching transition?

We are working with some people on time management skills now, that and her career track. Maybe by the time she 21, she'll be ready for Independence Now, a consumer-driven organization to help individuals become independent. They have independent living skills training and work with you in depth as many times as you need it. I'm working with them and Resources Connection of Prince Georges County; they provide the bridge to help teens transition into adulthood. Taylor is not completely ready for Independence Now; she needs that bridge, and they're going to teach her and help her make appointments and do other things, grow into it.

She wants to go to college, and she wants to work in or own a childcare center. There's a place on the campus of Morgan State in Baltimore called E.Y.E. [Engaging You Entrepreneurs] for Change; it's a youth program. They have a summer camp called Youth Business Builders, where you can learn about entrepreneurship. In an interview they decided it would be a good fit for Taylor, and the HSC LEAP grant paid for it. I drove her up every day for six weeks. My uncle walked her to campus, and she learned to take the MARC train to get to my workplace at the end of the day. We've done travel training with Independence Now for things like what to do if you get on the wrong bus.

What advice do you have for parents?

  • Be an advocate. Work hard on technology assistance, making sure that it's in place and transitions with them.
  • Don't wait for an IEP in the fall, all of the classes will be full. It took us four weeks and a meeting with the principal to fix Taylor's schedule. They messed up so bad she wound up getting not just ROTC, but a locker on the right floor and childcare a year early to compensate. Then, the children of the parents who wrote a letter with me got the schedule changes they had asked for, too. This year, the Hispanic parents and even a couple of teachers are working together with us to get scheduling done before the big dump in the fall.
  • Have faith in your child and believe in your gut. The sky is the limit. The only limitations are in your head. On Career Day the professionals came in to talk to the CRI class, but they weren't prepared to talk to these kids on their level. This year I'm making sure that they are prepared to talk to kids who want to be a doctor, a lawyer, or a veterinarian who aren't on a diploma track and guide them towards achievable goals in the same fields.

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