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Survival Guide for Parents of Kids with Special Needs

Teaching kids with special needs is not just a vocation. It is a specialized skill, and for some, even a calling. After COVID-19 shuttered schools last year, parents of kids with special needs found themselves, overnight, forced to assume the role of special educator, all while parenting, quarantining and, in some cases, simultaneously performing other jobs.

Parents faced this learning scenario with hard-won insight into the strategy, energy, time and skill required to help kids achieve.

Speaking for myself, I can only say (with a hint of desperation creeping into my voice), “I am not equal to the task.” Or, as I have read on social media in countless posts in countless variations, “HELP! I can’t do this again!”

Frederick’s Child consulted the experts to find answers, and hopefully, a bit of reassurance as well.

Your Child’s Rights

Education attorney Alexandra Rosenblatt, whose second-grade daughter has Down syndrome, wants to remind parents that a child has the same educational rights at home as they do in the school building.

“While almost all children struggle with virtual learning, the struggle for children with disabilities is significantly greater,” Rosenblatt says. “Schools still need to follow the IEP, monitor progress and hold IEP team meetings” just like before. “I see a lot of parents hesitant to request more support, services and modifications to meet their child’s needs. Some parents worry about being a ‘problem parent.’ Some parents simply don’t know they have the right to ask for more support and services.”

Schools must, Rosenblatt emphasizes, “follow what is in the IEP. If you don’t agree with what’s in the IEP, schools have to hold an IEP meeting.”

Your IEP

What’s in the IEP anyway? Annie McLaughlin, a board-certified behavior analyst and parent, advises parents to find out—in great detail. “Spend time reviewing your child’s IEP and try to understand what your child knows and doesn’t know,” she says.

McLaughlin, who works with parents to translate and construct better IEPs, encourages parents to ask educators questions such as, “What are these goals based on? How did you choose that number? How are you measuring progress? What supports are used in the classroom? Can I make that happen at home? How?”

McLaughlin also encourages parents to seek definitions for terms that would be unfamiliar to a layperson, such as “grade-level phonics.” “Go to the common core website. Email teachers,” McLaughlin says. “Get examples. Ask the teacher, ‘Can you take a video of yourself doing that skill?’ Ask them to train you.”

Rosenblatt agrees parents should be as informed as they can and keep detailed records. “Keep an electronic or physical notebook,” she advises. “Make notes each day about how successful learning was, whether the work and instruction were appropriate for your child, what behavioral and academic challenges your child experienced that day and your own observations about what skills your child is losing or gaining. Children will be entitled to compensatory or make-up services. Keeping your own data on what didn’t work and why will help get that compensation down the road.”

If you “know in your gut” your child is falling behind, having that “data piece is so important, so you can show what’s happening,” she says. And parents don’t have to go in to IEP meetings alone. “If parents who don’t know how to articulate or find what data they need to support what they’re asking, that’s where advocates and lawyers can help.” Don’t assume if you’re not getting something, that it can’t be done, she says. “If it’s doable in one district, it’s doable in another.”

Your Team

Shawn Gardiner teaches pre-K for 3-year-old children in an inclusion classroom. (Inclusion means typically developing children are included in a class with kids who have disabilities.) Gardiner says spring was challenging for kids in her class’ age group. “We spend so much of (class) working on social skills and hands-on play. Trying to work this into the virtual format is really challenging,” she says.

As a caregiver, enlist your child’s educational team for support, she says. Teachers are trained to do the heavy lifting academically. “For young children, try not to worry about scheduling time to do ‘academic work.’ Use the virtual sessions to see what your class is working on, and so your child can connect with their peers. When offline, schedule time for screen-free play together where you talk to your child,” Gardiner advises.

Rosenblatt concurs that parents shouldn’t expect to teach, but play a supporting role. “Children with learning differences and deficits need a lot more specialized instruction that parents simply cannot provide and should not be expected to provide,” Rosenblatt says. “I strongly urge schools and parents to add services and supports into the distance-learning plans to address caregiver training and support. If caregivers cannot be available to help with the instruction, the school needs to address this in the distance learning plans.”

McLaughlin says, “As much as possible, parents should familiarize themselves with the technology tools that the school will be using. If you need training on how to use the technology, ask for that through the special educator or the IEP process.”

More than anything, speak up if you need help. “Communication is key,” McLaughlin says. “Let the special educators know what is working for your child and what isn’t working. The special educator should be able to look at the individual learning characteristics of your child to recommend supports that can help. Even if they don’t know what the answer is, raise the question.”

Teachers want parents to approach them with questions and concerns, Gardiner says. She encourages parents to speak out and ask everything. “Don’t hold back. I feel like some issues took longer to fix because parents didn’t want to trouble me by asking when they came up,” she says. “Ask as soon as you have an issue! It’s my job.”

Gardiner acknowledges her parents’ pain, saying, “This is hard. I’m a teacher and mother of a 4-year-old child and I’m still figuring out what works. Teachers are so willing to be flexible, and we understand how stressful the situation is. We can work with you as long as you let us know what you need.”