The ins and outs of special education – as experienced by a 21 year old with Noonan’s Syndrome

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In 2014, nearly 1-in-5 kids under the age of 18 had special needs; Tim Ashley, a 21-year-old with Noonan Syndrome, is in that 20 percent.

In the same time frame, Michigan was behind the average, sitting somewhere between 70 and 75 percent, while the United States had a record high 83 percent graduation rate. That means 17 percent of students nationwide did not graduate.

The graduation rate is even worst for students with special needs. Of the 392,000 special needs students ages 14-21, 66 percent graduated with a high school diploma, 18 percent dropped out, 14 percent received an alternate certificate and 2 percent reached maximum age.

 

An overview of Noonan’s Syndrome by signs and symptoms. Infographic by Michael Downes.

Symptoms

“It wasn’t obvious right after he was born,” said Nancy Ashley, academic programs coordinator for MSU’s School of Journalism and Tim’s mother. “About 12 hours after he was born he had had a hard time breathing.”

Tim was born with a hole in his heart, which happens in roughly eight of every 1,000 babies and is common for babies with Noonan’s.

“They put him in the NICU,” said Nancy, “and that’s where they starting noticing the physical characteristics.”

Those physical characteristics? He had a concave, indented chest and a short, webbed neck — indicators of Noonan’s. Tim is also partially deaf in both ears, but it wasn’t until he was 7 years old that they discovered it. He also has a growth problem, standing at 5-foot-1.

Enrollment

Children with learning disabilities have a different enrollment process. School’s have a special process to assess each student’s needs. Surprisingly, most of the time it’s not the parents who have to get in contact with schools.

“We (as parents) really didn’t have to do anything,” said Nancy. “It was the doctor’s office. Once they diagnosed Tim, everything kind of just fell into place. The doctor’s office got us hooked up with Ingham County and representatives from Ingham County Intermediate School System came to our house and evaluated Timmy and got him started in its (sic) IEP (Individualized Education) program.”

The evaluation is to determine the accommodations the student will need. They seek to answer questions like, “Do they have to go to a special school? or Do they have to be in special courses?”

From there, the school and the parents work together and make an IEP.

IEPs

Michael Downes

A description of IEP’s and what they legally need. Infographic by Michael Downes

Elementary, middle and secondary schools have curricula, set-in-stone schedules of when students will learn certain things. That’s not the case for special needs students. They have their own goals set every year.

The IEP’s can vary in terms of what the end goal is.

Kristin Robinson, the program coordinator for Waterford Michigan’s Lifetrack program, a post high-school option for special needs students said that IEP’s can be as basic as comprehension of forms, and can get as complex as living on your own.

Schooling

The IEP system is used from kindergarten until the day the student graduates. For students to move on to the next grade, they have to achieve whatever their IEP is. If they don’t, they get held back and are given another year to do so.

Tim was held back four times, twice in kindergarten and twice in first grade. Nancy wasn’t comfortable with where her son was and had him transferred to the Okemos school system. From there it was smooth sailing.

Just like the curriculum, every special needs student’s experience is different. It all depends on what their accommodations are. Some students get extra time for exams and some have the tests read to them. Others, like Tim, don’t get tested at all.

Tim spent half of his days in a “regular” classroom and the other half in a specialized class.

“His academics were in what they call a ‘basic classroom,’ and that’s for special needs kids,” explained Nancy. “They have a certified teacher there to help them learn. If he was in art or gym or any kind of elective or at lunch-time, he was with ‘regular’ students.”

Where to after high school?

For special needs students to answer that question it depends on one thing. Have they graduated high school?

If yes, it’s either off to college or enter the workforce.

Every college has a program that accommodates for special needs students. Michigan State University has the Resource Center for Persons with Disabilities.

If they haven’t graduated, things get a bit more complicated.

Thankfully for non-graduate special ed students, the state of Michigan goes above and beyond to prepare them.

According to Robinson, most states provide care until the student is 19-21, but Michigan is different, it accommodates for special needs students until they are 26.

Tim hasn’t graduated and is still technically in high school. He’s enrolled in the SAIL Program, which is very similar to Lifetracks in Waterford. It’s a program where half of the day students are in the classroom learning and the other half of the day they’re doing work-based training.

Lifetracks provides worked-based for students and works with seven different worksites in the Waterford community to get the students acclimated.

The students are still in a school environment where they rotate classes just like they did in high school, but now it prepares them for life. It’s like going to class while having an unpaid internship. The students get the experience they need to prepare them for their future lives.

Despite hardships Tim has faced in school, his mother said, he still plans to graduate.

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