Jennifer Macchiarola couldn’t help but notice that her 3-month-old daughter Erin’s mouth was always hanging open. When she mentioned this to her mom friends, they assured her it was fine. “But in my gut,” says Macchiarola, “I knew it wasn’t.”
Soon after, at a Mommy & Me class at the Y in her New York City neighborhood, a visiting physical therapist evaluated Erin. “She spent about two minutes with every other child, but when she got to Erin, she devoted a good 15 minutes. I knew right away something was up,” says Macchiarola.
The physical therapist suggested that Macchiarola reach out to Early Intervention (EI), a system of services for children with developmental disabilities or delays. Once she did, Erin was evaluated by a team of experts, including a physical therapist, occupational therapist, and speech therapist who confirmed that she had low tone, or hypotonia—meaning that her muscles can be loose or floppy. “I was so upset and worried,” says Macchiarola. “Even as a nurse, I had never heard of EI or low tone—I had never heard of any of this.” When Macchiarola learned that kids with low tone may have delayed motor skills, muscle weakness, and lifelong coordination problems, she thought, Erin’s never going to be able to walk.
Erin started recieving feeding therapy twice a week (she would drink apple juice or yogurt through a straw, or purse her lips and try to suck in a Cheerio) and physical therapy once a week (which entailed performing muscle-strengthening exercises on a ball to improve the tone in her neck muscles).
By the time Erin turned 2, the family was moving to New Jersey, and Erin was doing so well that she no longer needed services. (Good news for parents whose kids have developmental delays: Speech therapy, PT, and the like aren’t always lifelong necessities.) Erin is now 11, plays sports, and shows no signs of muscle weakness or delays. Her mother is so happy about her chance encounter with the physical therapist at the Y and urges all her friends to follow their mother’s intuition and seek out answers: “You know your child best, and getting an evaluation can only help her,” she advises.
A sixth sense
Lots of parents wonder: Is my child on track, or does she have some sort of delay? “If you have a concern about development or a gut feeling that something is wrong, talk to your doctor,” says Georgina Peacock, M.D., a medical officer and developmental pediatrician at the Centers for Disease Control and Prevention, who is involved in their “Learn the Signs. Act Early” program, which is designed to help families identify early indicators of autism and other developmental disorders so they can line up the services and support they need. If you are not getting answers or your pediatrician is brushing you off, call Early Intervention directly. You do not need your doc’s approval.
The evidence for acting when a child is young is compelling. “We know that the brain is still developing in those first few years, which is why early intervention has a bigger impact,” says Peacock. Plus, stepping in early has ramifications down the line: If a baby has difficulty sitting, she may have delays walking. If a child doesn’t have words to communicate, she could turn to biting to get her point across.
The EI system also provides support for families. The therapists come to your home to work with your child using toys and objects around the house (chairs, tables, cups, stools), so parents can replicate the activities and continue to make progress when the therapists are not there. If you’re a working parent with a child in daycare, your therapist can visit the center. Finally, taking some action—whether it’s addressing speech delays or difficulty walking—is something parents and children are doing proactively. And turning this worry into action is helpful, says Peacock.
Understanding the system
Whether your child is a toddler or about to enter third grade, here’s what to expect throughout each step of the process:
Every state has an EI program, designed for kids from birth to age 3. “The program is based on what the kids need,” says Peacock, whether that’s speech therapy for a minor delay or comprehensive services for a more serious diagnosis of autism or cerebral palsy. Regardless of the state you hail from, your child will get a free comprehensive evaluation and may qualify for services such as occupational therapy for sensory processing issues (for instance, finding the feeling of clothing on your skin unbearable), physical therapy if he struggles with the stairs, or visits to a behavioral specialist for emotional issues.
Navigating the system can be tough because every state is a little different in what they call their program, how you find it, who provides the services—even what it takes for a child to be eligible to receive the services, says Cindy Oser, director of infant, early childhood, mental health strategy at ZERO TO THREE, a health education nonprofit based in Washington, D.C. The first step: Ask your pediatrician for the number or a referral for EI, or call the National Dissemination Center for Children with Disabilities (nichcy.org)—the website also includes clear help on the steps to take throughout the entire process. Then you’ll begin speaking with various people, relaying your story multiple times, setting up meetings and an evaluation, and eventually determining whether your child will get services. “You are going to become a really good storyteller and your child’s very best advocate,” says Oser. (For a user-friendly template to help you relate your child’s health history, go to cdc.gov and search “Act early, my story.”)
For kids ages 3 to 5, contact the local school district for an evaluation by the Committee for Preschool Special Education, or CPSE. Reasons for why kids might be eligible for services can run the gamut, including everything from speech articulation issues (like a lisp or difficulty articulating certain sounds, such as “l” or “r”), OT issues (like not holding pencils and crayons in the right way), learning disabilities, and attention deficit hyperactivity disorder to autism, hearing impairment, and speech and language impairment.
Depending on your preschooler’s delayed skills or disabilities, he will be evaluated by a team of professionals that may include a psychologist, a physical therapist, an occupational therapist, a special educator, and a speech specialist. Just having a disability doesn’t make your little one a shoe-in for services, says Oser. The disability must affect his or her functioning at school. If your child is approved for services, CPSE will help develop an individualized special education program, or IEP, which lays out goals for the child as well as any special services and support he will need to achieve those goals.
“Most special education is supposed to be provided in what is called the least restrictive environment,” says Oser. Ideally, a child will spend most of the school day in the regular classroom and the support is brought in for him. Sometimes, however, your child will have an aide, or, in special circumstances, will be taken out of the classroom for portions of the day to get special instruction. For instance, kids may go to a special resource room for speech or occupational therapy if they are working on their fine motor skills, or an aide may come in for social skills or to help with reading.
The process is similar if your child is in elementary school, only at this stage, you work with the Committee for Special Education (CSE). Again you contact your local school district to get the process underway. If your child is approved for services, educators will develop an IEP for her.
There’s a wide range of reasons why kids may need special services, points out Michele Borba, Ph.D. an education psychologist and former special education teacher in Palm Springs, California, and author of The Big Book of Parenting Solutions. “Is this a maturation issue, or a learning issue? You want to determine the why behind his problems and what is causing his struggle or acting out,” she says. It’s not unusual for a child to develop behavioral or emotional problems around the time of a divorce, Grandma’s death, or a family move, explains Borba. She recommends keeping notes on your child, tracking patterns that you see. That way, when you sit down with the teacher at the IEP meeting, and the teacher says she notices a brand-new issue, you can say it started around such-and-such time, and maybe pinpoint a reason behind it. While some kids may need special services for the long term (for autism, for instance), others may outgrow the need (if they overcome a stutter for instance, or if their struggles were caused by something going on at home).
Seek out support
Many parents feel isolated while trying to navigate the system, but you don’t have to go it alone. Tap your own network of resources—a friend who works in the school system, or a friend of a friend who has been through EI before. To get linked up with a local parent who can serve as a mentor, visit familyvoices.org where you can find a support group in your state. This mom or dad can attend meetings with you and can ask those in charge of the meeting, “What do you mean by that term? Can you say that in plain English?”
In-the-know parents can also give you practical advice for getting through the day. Such as, do you get a booth or a table when you go out to eat with your child? Connecting with families who went through a couple years back what you’re going through now can be tremendously useful, says Peacock. “They’re experienced and can tell you about pitfalls and resources.” If your child has a diagnosis like cerebral palsy or autism, reach out to a specific advocacy and parental support group.
Advocate for your child
Whether you’re dealing with EI or with a son or daughter in school who needs an IEP, it’s your job to act as your child’s advocate. “I always say to parents, you know your child better than anyone else,” says Oser. “You need to say, this is working or not working.” She stresses that it’s important to have the confidence to speak up if you feel like a discussion is happening that you don’t agree with.
For Sharon Moeykens of Arlington Heights, Illnois, the back-and-forth communication that goes into forming her daughter Sarah’s plan is important. “The school district sends me drafts of Sarah’s IEP a month before to look over the goals and make sure they are in line with what I see,” says Moeykens, whose daughter has been receiving extensive therapies since she was 2 months old for a rare chromosomal disorder and multiple health problems. “The school officials see things differently than I do as a mom,” says Moeykens. For instance, they may say Sarah is great at math, while at home she’s not showing Moeykens that. “Part of it is knowing your child, knowing what she needs, and what are your expectations,” she says. But in the end, “the school views it as a dual system: The IEP is just as much the parents’ as it is theirs,” she says.
Laurie Pelosi, of Long Hill Township, New Jersey, whose twins Alex and Ben had IEPs in elementary school, agrees that parental input is valued and encouraged. “I was definitely part of the process of forming IEPs for my sons. I met with the child study team every three to four months, and we would discuss, Do we still need an IEP for all of these things?” For instance, Alex had issues with retention and memory, and as he made steady progress, the school would tweak his IEP. “It was a joint process of observation at home and at school and then a cooperative approach to figure out what was happening,” says Pelosi, who now works as a paraprofessional in the school district often helping kids with special needs.
Looking out for changes also means answering tough questions. When your child is being evaluated, therapists will ask if he has mastered a certain skill, such as stacking blocks or helping get himself dressed. A parent’s inclination is to say yes, but more often than not, moms and dads think their kids can do more than they actually can. Be brutally honest. Kathleen Mahoney of East Rockaway, New York thought her son was leaps and bounds ahead of where he was in speech. It wasn’t until the evaluators broke it down and asked very specific questions: How many words does he have? How many words can he link together?—that she realized he was behind.
“It’s the mother’s instinct to give her child the benefit of the doubt,” says Christy Bradshaw, of Yountville, California, who began seeking out services when her child, Mason, was entering preschool and her family lived in Brooklyn. “Does she dress herself? Sure, she can put on a tutu. Does she ask for help when she needs it? Uh, in a way, yes. But what you must do instead is be very, very honest and find every way in which your child does not do things at the level she ‘should.’ ” Sure, facing your youngster’s shortcomings may be difficult, says Bradshaw, but soon enough, you’ll be analyzing the progress she’s making.
And if you think something is up with your child, try to observe her in a setting with other kids her age—at the park, Gymboree, or church. Seeing your child in a situation with five or ten kids gives you real perspective. “People always say, ‘She’s fine.’ Maybe she is, maybe she isn’t. If she doesn’t need services, it’s better to know,” says Robin Wigdahl, of Olathe, Kansas, whose daughter, Katherine, 9, has autism.
Know your rights
Whether you are working with EI or with the education system to develop an IEP, safeguards are in place to protect the rights of parents and their child. In EI, you have the right to be involved in every step of the process, from the evaluation, to the writing of the individualized family service plan (IFSP), to determining the services that your child gets. In the event that EI would like to make a change in your child’s treatment, EI is required to give prior written notice to the parents. Parents then have to give written consent for that change to happen. For more info on rights for families with kids in EI, go to nichcy.org/babies/notification-consent.
Families’ rights are strongly protected when it comes to forming IEPs as well. For instance, there are specific timelines to ensure that your child begins getting services as quicky as possible. Ask your service coordinator about this timeline, and get a copy of your parents’ rights when your child is referred. If you disagree with what is outlined in an IEP, you can get low-cost or free legal representation from the school district. Additionally, parents are ensured confidentiality and the right to view a child’s educational records; they can get an outside assessment of their child, if they like; and the school is required to give prior written notice and get parental consent for any changes they would like to make in a child’s IEP. For more info on school-age children, go to nichcy.org/schoolage/parental-rights.
Also, be sure to find out specifically what your state offers. You might qualify for free services in New York City, but move across the river to New Jersey, and you pay on a sliding scale—that is, if you qualify. Everything is different depending on the state you live in, and the resources your state has. Apply for all services and funding you are possibly eligible for, says Wigdahl, whose family has shelled out more than $100,000 of their own money for their daughter. Get your name on waiting lists if there are services you think your child may eventually need.
When she started the process, Bradshaw didn’t know her daughter Mason could have a free comprehensive evaluation through CPSE, so “we paid out of pocket. At that point, I was so nervous, I didn’t want to wait around anymore,” says Bradshaw. “We paid more for her speech therapy than we did for preschool.”
Dealing with labels
When kids enter the school system, parents often worry about their child being labeled special needs. “The label is the big can of worms,” says Borba. “But there is the worth-it factor. You can’t get the help you need without the label. The label from the IEP will determine the next placement.”
Though Alex Pelosi, 9, realized he benefited from the services he received in and out of the classroom for recall and memory, his mom, Laurie, says that around fourth grade he didn’t like getting pulled out of the classroom for help. She explained to him how he needed to focus on why he was doing this. “Once he broke through, his confidence was bolstered,” Laurie says. To give your child a boost, point out how he excels in other areas. “Highlighting his strength (say he’s fantastic at sports), really buffers things,” says Borba.
No parents go into it thinking that their child is going to have setbacks in the classroom. “Just like every mom, I expected my child to be in the gifted program,” says Bradshaw. It took her a month to call a school to set up her daughter Mason’s CPSE evaluation. “I wish I had started Mason with EI before she turned three. Every moment counts, and I feel like we lost a few.”
Talking about it
Trying to protect your little one from the idea that he is “different” is counterproductive, says Nancy Murphy, M.D., chair of the American Academy of Pediatric’s Council on Children with Disabilities, and a pediatrician in Salt Lake City. A better approach: “Demystify the whole thing,” she says. “Tell him, ‘You think/move/speak in your own way, and we have to make sure you can accomplish the functions you need.’ If you say, “You’re not different, then we deny it, and make it seem bad to be different.”
Oser points out that kids recognize that they are unique. They respond best to concrete, direct examples. If your child asks, “Why do I receive speech therapy?” Oser suggests a script like this: “When I drive, I have to sit on a cushion because I’m short. That allows me to do what I need to do. You are special because you need a little help to make your speech better. Once it is better, you will have a much easier time telling stories or singing with your friends.”
Learning the lingo
Feel like everyone’s speaking a foreign language? Our crib sheet will help you decipher this new tongue.
Comprehensive Evaluation / Assessment: a free testing of your child, in your home, to determine disabilities
IEP: Individualized Special Education Program
EI: Early Intervention
CPSE: Committee on Preschool Special Education
Integrated School: a school that integrates special needs students into a classroom of typical students.
SEIT, Special Education Itinerant Teacher: a teacher that travels to various schools and settings to work with particular groups of children
OT: Occupational Therapy / Occupational Therapist
PT: Physical Therapy / Physical Therapist
SLP: Speech Language Pathologist
Developmental Pediatrician: a doctor with specialized training in kids’ developmental and behavioral issues
Neurologist: Doctor who focuses on problems of the nervous system, such as seizures, delayed speech, headaches
Have a child with special needs? Feel free to tell us your story in the comments sections below.