Lindsey knew her son Cooper would need special care almost as soon as he was born. A triplet, he had a stroke in-utero, and scans revealed critical areas of his brain hadn’t developed properly. It was clear he would need intensive, long-term treatment. However, as Lindsey soon realized, having a diagnosis doesn’t equate to understanding all that diagnosis can mean.
As a teacher, I’ve worked with countless parents whose children have special needs. Often, I’ve been the first professional to broach the subject, the person who helps parents navigate their fears, concerns and the logistical process. In the end, many parents find they have more questions than answers. What’s next? And, how do I do what’s best for my child?
What follows are best practices drawn from years of teaching and from interviews with parents and experts. They’re not a step-by-step guide but offered in the hope that they might alleviate some worry, generate questions for consideration, and offer reassurance as you navigate the path ahead.
Arm yourself with information.
One of the best things you can do is gather all the information you can. Understanding the manifestations and nuances of a diagnosis will make you a better advocate for your child. The internet is a plethora of information — some useful, some not. Choose your sources carefully and understand that not everything out there will apply to your situation. Do your research, ask questions and connect with experts to determine what your child’s diagnosis means.
Establish clear lines of communication.
I can’t emphasize how important regular and open communication is between parents and teachers. Being upfront about your child’s diagnosis and needs will help teachers develop effective learning strategies. A good teacher will observe your child from a lens different from that of a parent, and those combined observations are valuable.
Devon, a learning specialist and private tutor, explains, “A classroom is a unique environment. Your child’s behavior might be different when in a room full of peers, outside of a one-on-one setting.” Be receptive to the teacher’s observations and trust that they want what’s best for your child.
At the same time, be proactive about what you’re noticing outside of school. Changes at home can affect your child’s classroom experience. Schedule regular check-ins with the teacher to monitor your child’s progress. This will ensure everyone feels comfortable and is accountable. Find a system that works and stick to it.
Develop a plan of action.
Learning that your child will face challenges can be one of the hardest things a parent has to digest. Lindsey admits, “Hearing that your 2-year-old has only just hit the mark for a 3-month-old can be hard to hear. You wonder, ‘Will he ever catch up?’” But one of the best things parents can do for their children is develop a strategy for success.
A teacher is a great resource in this process. Rely on their expertise to develop attainable, short and long-term goals, as well as measurable benchmarks for assessment. Ask questions and share your own concerns and expectations. Make sure you understand and are comfortable with the plan.
Bring all the players to the table.
Therapists, psychologists and tutors use different skills to work with your child. Allow teachers to communicate with these experts to develop a multi-pronged learning plan. Devon uses a round table in her office for student meetings, a visual reminder that when everyone sees one another as equal contributors, students will be better off.
In the beginning, Stephanie, whose son Adam has multiple disabilities, used an educational advocate, but over time, she realized the school system had his best interests at heart. Margaret Kulkin, a Washington-state educator and director of the Northwest K-8 Learning Center, suggests vetting professionals, checking their references and credentials. Then, trust them to lead you forward.
Ask, 'Is this the best learning environment for my child?'
Many parents establish an educational game plan long before a child’s first day of school. However, a special needs diagnosis could cause you to reevaluate that plan. Lindsey knew her feeder school wasn’t right for Cooper, but it took months to receive approval to move him to a different program.
“In my heart I knew one school was better for him than the other,” she says. “It’s absolutely important to have someone who will be a partner with you and who will create the right learning atmosphere for your kid.”
Trust your gut. If you don’t believe your child is in the best environment, don’t hesitate to consider other options.
Be flexible with expectations.
Stephanie recalls the story of a mother who was still helping an older child dress himself and her promise that Adam would be independent in self-care. Years later, however, she acknowledges that her goals for her son have changed. With a special needs child, outcomes can be uncertain. Parents and teachers should work in tandem to set realistic expectations for the child but should also understand that the child’s needs can change over time. A child may require more support, or less. Finding effective strategies can be an ever-evolving process.
Build a community of support.
The National Center for Education Statistics reports that in recent years, as many as 6 million public school children received special education services. Chances are, other people have asked themselves the same questions you’re asking now.
Find resources to guide you — a learning specialist, a support group, doctors conducting research in your area. You might not feel the need for a traditional support group, but having something as simple as an online group of fellow parents can be a great source of empathy as well as practical support.
Stephanie feels lucky to be raising her child at this point in time. “Does he have challenges?” she says. “Yes, but I belong to several Facebook groups for parents like me. I can ask for advice or resources or just see what everyone else is going through.”
If your child sees you advocating on their behalf, they’ll feel more empowered to do the same. In time, they may learn to speak up about their own needs, including when to ask for help.
Discussing a diagnosis openly and thoughtfully can help de-mystify the experience and reassure your child that there’s nothing wrong.
“Your child is not a disability,” says Devon. “A diagnosis is part of who your child is, not the whole of who your child is.” Margaret includes students in goal-setting meetings. She stresses it’s important for students to understand that specialists are there to help them succeed. “Be an active participant,” she tells parents. “Be a partner in the learning process so your child will do the same.”
It’s easy to get wrapped up in the litany of forms and paperwork and questions and logistics that follow a diagnosis. You might feel like you’ll never have enough information or that there’s something more you can do. Trust you’re doing all you can for your child. At the same time, recognize that there aren’t any surefire answers. It won’t always be an easy road, but there are many people waiting to support you along the way.