Bridging the Gap Between School and Home for Special Needs Kids

There is one absolute when it comes to special-needs children: Every child’s diagnosis, therapy plan, and prognosis is different, and can evolve differently over the years.

There is another absolute, since 1976: Under terms outlined in the Individuals with Disabilities Education Act, each child who is determined to have special needs and is given an IEP, or Individualized Education Program, has the right to a free and appropriate public school education, just like any student.

That second absolute, however, represents a broad umbrella under which to shelter some 6,429,431 special-needs children, ages 3 to 21, in the U.S. (The figure dates from the fall of 2012 and comes from the US Department of Education.)

Determining just what is “appropriate” for all, as required by law, can be a tall order, and many Staten Island parents faced with this puzzle, say they’ve learned one thing — especially parents of youngsters who are placed in District 75 schools or programs. In New York City, schools in this district cater specifically to the more seriously disabled.

“Listen to the therapists and teachers, but if you know your child, do the best you can to get what you need. If they try to take something away from you, don’t let them,” said one mother from Eltingville whose 7-year-old son is currently in a 6:1:1 classroom operated under the auspices of District 75. His mom says he falls into the middle of the autistic spectrum. His twin sister is in a mainstream classroom elsewhere.

“Parents are the boss of their kids” said West Brighton mom Angela Quinn, who spent years advocating for her children. Her two daughters are on opposite ends of the autistic spectrum and are now 32 and 33 years old. One is enrolled in a day care program at On Your Mark and lives at home; the other has a college degree in literature, lives in her own house, just bought a new car and works as a para at P.S. 37 in Great Kills. “If your kids need it (special kinds of services), they should get it. You don’t have to settle for what the Department of Education tells you. Go with your gut. Fight for it.”

Standing firm and advocating for your child is admirable, and in many cases essential, say those with knowledge of the special-needs community. But according to Laura Kennedy, director of the Early Childhood Direction Center (ECDC) on Staten Island, “it’s really about communicating” when it comes to making progress on the goals outlined in the child’s IEP.

Kennedy cites a fellow ECDC staffer as the source of a quote she hears repeatedly: “Your child is in Ireland at home and Bermuda at school,” if there is no communication.

To facilitate this communication, the New York City Department of Education sets aside time for parent-teacher conferences for all students, including those in District 75. The fall conferences for District 75 students are just around the corner — on Tuesday, Nov. 15 (day hours) and Wednesday, Nov. 16 (evening hours).

Kennedy acknowledges that “it can be difficult” to stay on the same page, but she says that, especially with students in District 75 schools, “there can’t be a one-time meeting. Parents must be familiar with the IEP goals. Teachers must know the triggers — what causes negative and positive behavior,” in addition to being versed in an individual child’s IEP.

Talking is a must, say the pros.

The mom from Eltingville says she goes to the conferences in each of her children’s schools. She said that parent-teacher conferences are similar in that both of her children are 7 years old. But, when it comes to her daughter, “they’re more about education — about what she is doing in class, where she needs help, how she’s behaving.”

In terms of her son, “the conference focuses on if he’s meeting his goals, what would be a good idea to try. Is it going well? Is his IEP correct? Maybe you could try harder at home because we’re working at this in class. It’s a lot about follow-through,” she explained.

“It’s absolutely valuable twice a year,” she went on. “When you have a teacher who communicates with you, you may see a need for a therapy when the teacher doesn’t think the child really needs it.” She finds the give-and-take useful, and says she reviews her son’s IEP before each parent-teacher conversation.

“He’s always had very good teachers and very knowledgeable teachers. I really get a sense of how he is in the classroom and whether I can put him in a less restrictive environment,” she acknowledged. To date, she’s chosen to keep him where he is.

One Dongan Hills mother, who has a 9-year-old boy enrolled in a District 75 school, says she doesn’t make a habit of attending parent-teacher conferences. “I don’t take the IEP to the conferences,” she admits.

However, because she drops off and picks up her son, “I am so hands-on with him at the school. I speak to the paras in the room and the teacher. I get all the information, or I say what I want to say when I want to say it to them — and you get your answers.”

“I might go to one parent-teacher conference, but there’s nothing that’s going to be said that I don’t already know,” she explained.

“Most parents are not prepared,” however, she said. “Especially the new ones.”

According to two former District 75 principals, who asked not to be named, parents of each District 75 student should be given a five-page “Parents’ Bill of Rights and Responsibilities.” The document is courtesy of the city’s Department of Education and is distributed to help “foster active engagement between parents and schools…”

Some schools also distribute a one-page advisory titled “IEP Meeting Checklist for Parents.” This is a way of keeping track of the various steps involved in entering the special-needs system and developing an IEP that’s on target and free of error.

The mother in Dongan Hills said she receives the “Parents Bill of Rights and Responsibilities” every year, and she got the IEP checklist.

“Yeah, it’s helpful. Well, not really. But it’s helpful for somebody who’s new,” she said. In general, she added, “special-ed parents, it’s a totally different life.” You’re feeling your way.

For another Eltingville mother who has two 13-year-old children in two different District 75 schools and with very different IEPs, parent-teacher conferences are a time to discuss therapy. “They (the schools) seem to always lack the therapists we need. There have been a couple times we’ve gone until the month of November without services. Parents must ask themselves and the teachers: Are the mandates being filled?”

“I have no complaints with the teachers my kids have now. But teachers are limited in what they can do,” she said.

She added this piece of advice: “If you’re not sure what’s written on the IEP, get an advocate. Don’t just sign your name. You have to be sure what’s written on the IEP. The wording must be exact. If, in your gut, your child isn’t ready to have therapy removed, don’t let it happen.”

All said parent-teacher conferences had some value, though.

Mrs. Quinn and the others agree, the teachers are not the stumbling block. “I never had a problem with the schools themselves. The teachers knew my kids. Yes, they go over the IEP. Are they making their goals? Is there anything the parent wants the teachers to work on? It’s so different between each kid,” she said.

“There could be more services, but the public education system hasn’t failed me,” said the first mom from Eltingville.

Here are some good questions to ask:

Here are 10 questions parents should ask during parent/teacher conferences, according to Advocates for Children of New York. The full list is available from the Early Childhood Direction Center on Staten Island.