For many parents of a child who receives a special-needs diagnosis, their first question is “What do I do now?” Knowing how to move forward isn’t easy, but having the right information along with effective resources will help your family successfully manage the road ahead. Here are five tips to help you along the way:
1. Whatever you do – stay away from Google.
“Internet surfing can increase stress levels tremendously,” says Lisa Alberts, an advanced practice nurse who has been working with special needs children and adults for the last 30 years at Bancroft. While the internet can be a great place to find other resources or connect with groups, it’s not the best for clinical advice. Plus, some of the information floating around on the web can be downright harmful, she says.
“If your child is diagnosed with Down syndrome, instead of randomly seeing what Google says about it, focus on the support organizations that are specializing in that area,” says Alberts. “The more information you have, the better able you are to ask the right questions to your pediatrician.”
If your child has been diagnosed with autism, Alberts suggests resources like Autism Speaks or Autism NJ.
But if you do happen to find something on the internet that concerns you, don’t be afraid to question your doctor about it. In fact, Alberts encourages it.
“It’s a good way to communicate with your provider,” she says. “It keeps us on our toes, because if it’s something we’re not aware of, we can look it up and make a decision. I encourage people to bring in their questions. It’s one more thing we can talk about.”
2. Ask lots of questions. And take notes when you do.
If your pediatrician says, “I think your child has autism,” your first question should be, “What’s next?”
Casey Berson, MD, a clinical associate at Centra PC who specializes in adult, child and adolescent psychiatry, says it’s important for parents to ask plenty of questions and gather information.
“When we first tell them about a diagnosis, it’s about letting them get that information and ask questions, and trying not to bombard them,” she says.
Berson says it’s also important that parents completely understand the diagnosis before moving forward with any treatment.
“Speak to whoever the diagnosis is coming from to make sure you understand what it is and what it means. Communication is key,” she says.
“The truth is, the diagnosis we have for psychology is kind of broad, and no one is a cookie-cutter case, so we’re stuck saying, ‘You’re showing a lot of symptoms of this, and that’s why we’re going to give this diagnosis,’” Berson says. “The first part is to understand what we’re seeing that fits the diagnosis and what that means. From there, it’s kind of what things we can do to help. I think it’s OK to give yourself a little bit more time to come to grips with that, too.”
When heading into doctor’s appointments, keeping notes and writing everything down can also be helpful, particularly because parents may not always absorb the information at first, adds Alberts.
“How many times do families go to the doctor’s, don’t take notes and leave thinking, ‘I have no idea what was just said,’” she says. “You’re not going to absorb it the first time – you’ll probably have to go back and ask several times – that’s why writing things down is always a good idea. It’s hard to commit things to memory when you’re stressed out.”
3. Tap into the right support networks.
“My advice to parents would be to take a deep breath, call your pediatrician, find out what your resources are and make a plan,” says Alberts. “There are so many resources available to families – you just need to find them.”
Alberts suggests talking to your school district or your pediatrician for a list of resources. “A good family practice provider has a list,” she says. “Parents need to find someone they can talk to, whether it’s a friend or a family member, about their stress or the diagnosis, or the particular situation the child is in.”
4. Get to know your rights – and that you have them.
“Parents don’t think they have rights in special education, but they do,” explains Alberts. “Some parents don’t have any clue they can access early intervention services, which is really unfortunate.”
Early Intervention Services are available for children under age 3 who have been diagnosed with special needs. The federal program first provides an evaluation of the child to determine what resources will help most. Then, a plan is put in place to connect the family with appropriate providers.
For older children, two educational plans – a 504 and an Individualized Education Program (IEP) – are designed to help within the school setting.
“Any clinician can request a 504,” says Bersen. “If you go to your school and request one, it’s basically a way to talk about accommodations for a child with any type of issues.” A 504 could provide extra time for test-taking or the option to give verbal answers to test questions instead of written ones.
“Some kids do great with the 504, and some need that more outlined individualized plan,” adds Berson. “An IEP is that individualized education plan.”
Children who receive an IEP have a blueprint of specialized instruction they will receive in school. Because of its detailed, individualized content, the IEP requires a bit more of an assessment to be put in place.
To be sure your child is receiving the support they need, Berson encourages parents to establish a good connection and line of communication with the point person at school, whether it’s a guidance counselor or teacher.
“Parents should know what’s going on in school,” says Berson. “Teachers by and large want students to learn, so it takes work from everybody to do that.”
5. Take care of yourself and the rest of your family.
“Parents need to take care of themselves – like you put your oxygen on first on the airplane,” says Alberts.
While life might feel like a whirlwind after a diagnosis, selfcare is important for parents. If you don’t acknowledge the diagnosis or the stress, Albert notes, it can get worse and snowball for everyone in the family – particularly the child. Even siblings struggling with the news or changes to the family dynamic may also need extra support.
“That should be a part of the family plan, incorporating the de-stressing activities or groups for other members of the family,” says Alberts. “It’s a big stressor. A lot of parents end up getting divorced, siblings develop their own set of behavior issues, so it really should be addressed as part of the initial process.”
GET CONNECTED
When your child receives a special needs diagnosis, your pediatrician and school district should be able to guide you to available resources. But here’s a quick list of some resources that may be helpful:
State Department of Health
nj.gov/health
The Department of Health offers helpful information and a hotline for accessing early intervention services.
Statewide Parent Advocacy Network (SPAN)
spanadvocacy.org
SPAN can help families learn more about their rights, secure appropriate services, navigate the health, mental health and education systems, among many other services.
Autism Speaks
autismspeaks.org
The autism advocacy organization offers a “First 100 Days” kit on what to do right after an autism diagnosis.
Perform CARE
performcarenj.org
Perform Care tracks care and can assist with accessing services for children and their families.
Project CHILD FIND
nj.gov/education
The project develops and distributes information about early intervention services throughout the state.
Oaks Integrated Care
oaksintcare.org
Oaks offers counseling services and in-home support services, as well as group homes for children with developmental disabilities.
