Back to School When Your Kid Has Special Needs

How to manage the anxiety that can come with a new year

This year our oldest child is starting his freshman year of college. Just writing those words stirs up stressful thoughts about all the changes and challenges in store for him. But the start of Tom's college career doesn't hold a candle to the anxiety I feel as my 15-year-old daughter – who has significant developmental delays – prepares for her third year at her special needs school.

My son can easily tell me and my husband what's going on in school and his life. My daughter can't. Lizzy's inability to express herself clearly means I'm often at the mercy of her team of teachers and therapists to tell me how her day went. It helps to know she's in a great program with a talented and caring staff, but relying on a third party to describe the six hours she is away from me fills me with anxiety.

And I know many parents of kids with special needs share this additional layer of stress as the summer draws to a close. "Anxiety and nerves regarding the new school year – whether it is a new school or grade – can bring a sense of heightened anxiety to those parents whose children have a disability," says Katherine Griesmeyer, LMSW, a social worker at a private special needs school on Long Island, New York.

What's a stressed-out, time-crunched mom to do? Eating chocolate and hiding under the covers may bring momentary solace, but no long-term relief. So I spoke with experts – mental health professionals and other parents of kids with special needs – to put together a list of strategies for managing the anxiety of the upcoming year.

Rely on (or build) your support network
Last year my sweet, verbally limited, daughter shocked the aide on her school bus when she told the woman to "leave her the hell alone." Fortunately I have a network of moms of special needs children, and they understood both my pride and frustration over Lizzy's ability to speak a complete sentence at the most inopportune time. Their knowing laughter provided exactly the kind of comfort I needed (and that my friends and family who have typical kids just can't offer).  

If you need help building your support network, Griesmeyer advises looking for local groups. Your school district's special education PTA (SEPTA) is a good place to start. Parents who understand the stress, fear, anxiety, and exhaustion of raising a child with special needs can be an invaluable source of understanding when you need it most.

Practice adjusting to the changes
"Preparing for the upcoming year with your child by practicing what is expected can help lessen both your anxiety and theirs," says Griesmeyer. She suggests driving or taking walks by the school, playing on the playground, and meeting the teacher and staff before the first day, if possible.

For Kristi Rieger Campbell, taking her 8-year-old son – who has developmental and language delays – to the open house at their public school in Virginia each year is a helpful exercise for both of them. Because he has sensory processing issues, she also arranges a separate time when he can meet his teacher and aide privately in a calmer environment. Knowing her son's issues are understood and being respected goes a long way to lowering her stress.

Figure out your specific fears and concerns
Kelly Priest, mom of a 17-year-old daughter and 14-year-old son in Los Angeles asks herself three questions whenever her son, who is autistic, is experiencing a problem: Is this a stretch for him? Is it a struggle? Is he really suffering?

Last year her son had a difficult transition from a small elementary school, where he was very comfortable, to their district's large middle school. It was a stretch for him to adjust to the harder demands of his new classes. Priest reassured her son that he was getting better at handing his assignments in on time and that his grades would eventually reflect that.

It was harder to watch him struggle to make new friends. Once she accepted that that it wasn't her job to make him comfortable, she was able to accept her son's struggle to find his identity. Eventually he did find a group of friends and is much happier now. Priest says if she feels her son is suffering, then that's the time for her to "jump in, make it stop, change it."

Once you understand your fears and worries, says Griesmeyer, you can prepare in specific ways to lessen those fears.

Get to know your options
Griesmeyer suggests requesting a session with your district's social worker, to learn about all the resources available in your area. You can also research other means of support, such as private schools or occupational therapy resources. Knowing you have options to explore if your child does struggle can ease your anxiety now.

Eileen Shaklee of New Jersey is the mom of a 13-year-old boy with autism. She's also an autism advocate and the author of the popular blog Autism With a Side of Fries. Last year her son transitioned to their district's middle school, but she quickly realized that the accommodations in his Individual Education Plan (IEP) were not being followed. The school was handling increase in aggression, crying, and repetitive questioning by having him spend most of his day cut off from the rest of the school. He became bored, angry, and anxious.  

After repeated meetings and attempts to solve the problems, Shaklee and her husband eventually pulled him out of that school and placed him in a private school for students with autism. He is now happy and thriving. Knowing what options are available to you, including how to mediate issues with your child's school if you need to, can go a long way to easing your worries about a new school year.

Don't forget to take care of yourself
If I had a dollar for every time a friend, family member, or professional emphasized the importance of self-care as a parent of a kid with special needs, I would be rich enough to hire a masseuse to come to my house once a week. But, of course, I do feel better when I carve out even a few minutes for myself.

Shaklee agrees it's hard to find time, but she says a manicure is one way she takes care of herself. Campbell enjoys a girls' night out with her friends. She also finds binge-watching her favorite TV shows on Netflix is a good way to wind down from a hectic day and take a break from her worries. 

"While it may not seem possible at times, it is important to enjoy the small things," Griesmeyer says. "Take a few minutes a day to sit, enjoy some quiet time. Leave the laundry, it will always be there. Enjoy that cup of coffee. Find what brings you joy, and do not feel guilty [about doing it]."

One of the greatest acts of self-care is seeking out professional counseling when you need it. I love Thursdays because for 45 minutes I get to sit on my therapist's couch and have someone listen to me say everything I am thinking and feeling without any judgment. I leave her office feeling lighter and more able to enjoy my role as mom.

The fear of the unknown can sometimes be harder to deal with than the actual issues that crop up. I always remind myself that I know my daughter best, and we will survive the new school year, whatever it may bring.