My husband and I sat on the edge of our chairs, waiting for a pediatric neurologist to give us our 7-year-old daughter’s diagnosis.
Seemingly oblivious to our nervousness, Lee slipped off my lap and let out a shriek of delight as she took in rows of little figurines and toys lined up on bookshelves. Darting over, she touched at least 200 toys in two minutes, her fingers flying over each item like someone playing rag- time on the piano.
The neurologist smiled, pushed her test results aside and scribbled on a new piece of paper: “ADHD, sensory-processing disorder, mild anxiety.”
I slumped back in my chair. How would we cope with all of these challenges?
It took me some years to let go of my traditional notions of parenting, to realize we might never have a child who curled up in an armchair and read a book for hours, or one who could compete with an intense focus on a sport or put up with the noise of a school rally or concert. But as my husband and I relinquished our preconceived ideas of what Lee’s childhood should look like, we discovered new ones that reflected the beauty of her differences.
If you have just been given your child’s mental health diagnosis and are feeling overwhelmed, be assured that there is solid advice to guide you on your journey. Here are some burning questions I had and the best guidance I received along the way from educators, doctors and therapists.
Where do I start?
Begin your journey to understanding and supporting your child by reaching out and asking for help as soon as possible. I started with Lee’s teacher, who needed the information in the child psychologist’s diagnosis. She suggested my daughter be placed on a 504 plan with special accommodations to help her achieve academic success.
By the end of second grade, Lee was still struggling to keep up with the rest of the class, so her teacher requested that the school evaluate her for an Individualized Education Plan (IEP) to replace the 504. As part of school districts’ special education programs, the 504 plan and Individualized Education Plan are designed to offer academic and other forms of support to K-12 students with disabilities. Indeed, Lee’s IEP was a road map for classroom accommodations, a modified curriculum and services such as occupational therapy for dysgraphia, Lee’s writing disability.
I became part of a team that met annually to measure Lee’s progress with goals, benchmarks and objectives, along with meetings to re-evaluate the IEP throughout the year. Since parents, counselors, administrators and teachers meet to devise these plans, they can be powerful in aiding classroom teachers. Ann Oppenheim, a second-grade teacher at Aspen Elementary in Thousand Oaks, stresses that directives to teachers need to be as specific as possible. “Specifics, specifics, specifics! All information is important. No information is insignificant,” Oppenheim says. To better assess her students’ needs, she uses a list of questions for parents to fill out. (See the “Help Your Child’s Teacher Get to Know Your Child” sidebar.)
Some children might need more visual aids, whereas others could use more hands-on techniques. Helping teachers know the way your child learns can be a valuable tool for them to use in the classroom. Some of Lee’s accommodations included regular breaks and sensory exercises, along with extra time for testing and fewer spelling words on assessments.
Will other people judge me?
Don’t be afraid to educate others about your child’s differences and give them a chance to empathize. Yes, there were people who judged me for having a child who didn’t conform to society’s standards, one who didn’t look, act or behave like other children. But when I shared Lee’s diagnosis with other parents, coaches and relatives, it paved the way to better understanding and support.
As Oppenheim says, “Families of special-needs children are navigating a world that those who are not in their position often do not understand. While fear of judgment is valid, it takes a backseat to what is best for your child. A gentle reply may be, ‘I appreciate what you’re trying to say, but for our family, we’ve consulted with experts and will make our decisions based on those meetings.’”
When I felt judgment blasting my way, I remembered the old adage that knowledge is power and ignorance fuels judgment. That gave me the strength to advocate for my child.
Why do I compare my child to neurotypical children?
It takes time to process the emotions that come with a child’s neurodivergent diagnosis. For me, an initial resistance gave way to feelings of frustration that my motherhood journey wouldn’t turn out the way I’d planned. I grieved the loss of my hopes for a neurotypical child and tried not to compare, but it was difficult.
Carla Tahan, M.D., a pediatrician in Westlake Village, says, “Comparison starts from day one and never stops. It’s more than just talking and making conversation. On both sides, we just want to belong and fit in because we’re good parents and our kids are good, and we feel like our kids are a reflection of ourselves.” However, Tahan warns, comparing a child with a neurodivergent diagnosis to a neurotypical child can set you and your child up for failure.
When Lee was in elementary school, I was frustrated when she didn’t want to play on the blacktop like the other kids during recess. Instead, she chased lizards on the grassy field. In other words, she followed her own curiosity and instincts, a characteristic that developed into a passion for nature and animals. And when she was old enough, she landed a role as a junior counselor at a nature camp in the Santa Monica Mountains.
Once I embraced my child’s strengths, I could appreciate her unique differences — and I stopped feeling compelled to compare her to other children.
How do I handle my emotions when my child’s behavior feels out of control?
When your child has an emotional outburst, listen and reflect before you respond. As a parent, it was easy for me to get caught up in Lee’s emotions and react with a knee- jerk comment, but this only added to the high combustion. Therapy taught me that children with mental health conditions can have emotional dysregulation. Some are quick to anger; others have moods that range from high to low. It was important for me to find a way to stay calm and collected.
Patricia Van Buskirk, a marriage and family therapist in Simi Valley, says, “An ‘out-of-control’ child needs help to feel they have returned to their body, and to the moment, safe and contained. Depending on your child’s sensory load, Van Buskirk recommends calming techniques such as placing your hands gently on their shoulders while speaking to them in a soft voice. Or you might go outside to somewhere safe where they can jump, run or swing. Another option is to hold them close to your body to help them feel contained as they attempt to self-regulate.
“The behavior may be unacceptable,” Van Buskirk says, “…however, the child does not want to misbehave. Their impulses are in control of them in the moment. They need a loving, calm support system.”
Likewise, my therapist counseled me to listen to Lee’s outbursts, take a few deep breaths and reflect back aloud to Lee the emotions I believed she was feeling, all the while giving both of us some necessary time to cool down.
How do I get out of a negative rut?
Every day, take the time to celebrate what went well that day, even if it was just a few steps forward. Sometimes, I slipped into a negative rut, feeling overwhelmed by all the challenges Lee and I faced. However, “if the parent is despondent and feels hopeless, these feelings will be transmitted to the child,” Van Buskirk says.
Children with mental health challenges often feel isolated, alone and self-critical, blaming themselves for not measuring up to other people’s standards. Judgment, real or perceived, can cause a child to have a low sense of worth and depressive thoughts. To combat this, Van Buskirk says, “always, always lean into the positive.”
Sharing with your child what went well during the day can tip the balance toward a healthier perspective for both of you. I loved to snuggle up with Lee at bedtime and go over all the special moments in her day. With love and a positive outlook, even the toughest challenges seem possible.
5 Tips to Navigate Your Child’s Neurodivergent Diagnosis
1. Talk to teachers about your child’s diagnosis so they can assess your child’s needs.
2. Help other people understand your child’s challenges by educating them.
3. Grieve the loss of your hopes for a neurotypical child and focus on your neurodivergent child’s strengths.
4. During your child’s emotional outburts, don’t react — respond with care and control.
5. Take time during the day to rejoice in the positive moments, no matter how small the accomplishments.
Help Teachers Get to Know Your Child
Here are some sample questions Ann Oppenheim, a second-grade teacher at Aspen Elementary in Thousand Oaks, may ask the parent — questions that you can tailor and answer for your child’s teachers:
1. What makes your child smile, laugh, have an extraordinary time?
2. What makes your child become quiet, with drawn, non-engaging?
3. What sense(s) is the strongest in your child?
4. What stimulation(s) is too much for your child?
5. What is the best way to engage your child in a small and/or large group of children?
6. Does your child have a person or object that he feels very safe with other than family members?
Jennifer Gay Summers is a journalist, author and ADHD mom blogger whose work includes essays published in ADDitude, Adoptive Families and Chicken Soup anthologies. She can be found at jennifergaysummers.com.