How to Support Parents of Special Needs Children

I gave birth to the most beautiful baby boy almost 10 years ago. I had a relatively uncomplicated pregnancy and delivery, and aside from the fact that he struggled to sleep at night, he was an easy baby. As he grew into a strong-willed toddler, we began to see classic signs of ADHD, something both my husband and I were personally familiar with. He was also very loving and affectionate, so taking the good with the challenges was easy.

By the time he was 5, he was officially diagnosed with ADHD, and by the end of kindergarten, he was identified as gifted. To our surprise, other symptoms were popping up that were largely ignored by his pediatrician, teachers, and therapist. Fast forward three years, and we are now looking at multiple other possible diagnoses. According to the United States Census Bureau, there has been a rise in neurodivergent diagnoses over the past several years. It is disheartening to know there are still kids slipping through the cracks because of chronic underdiagnosis.¹ Being the parent of a special needs child is incredibly rewarding and challenging, but with support, the challenges can be much easier to overcome. Here are some ideas for how to support parents of special needs children:

How to Support Parents of Special Needs Children

1. Trust Their Instincts About Their Child

No one knows their children like their parents, so if a parent confides in you that they have concerns, trust that something is up. There are times when parents are overly cautious, but by and large, they have stellar intuition when it comes to their child, and people don’t give us nearly the credit we deserve for recognizing something’s not right.

2. Be Cautious with the Language You Use

Both medical and educational settings use the term “special needs” quite often, so it seems like it would be the universally appropriate term. However, people often use the term to sidestep or soften the use of the word “disabled.” This stigmatizes disability as something we shouldn’t discuss when there is nothing shameful about having a disability or having a child with a disability.

While some individuals find no offense in the term “special needs” or even prefer it over “disabled,” others can find it offensive. It’s always best to ask what term is preferred when possible and be aware of the potential sensitivity of some terms. Other words and phrases to stay away from are “challenged” and “differently abled.” A term that is becoming more common and often may be preferable for mental and developmental disabilities is “neurodivergent.” This term illuminates the fact that we all have differently wired brains. Essentially it creates an inclusive environment for all individuals.

3. Provide More Remote and Flexible Work Opportunities

In a recent study published in the journal Pediatrics, nearly 15% of families with a child with chronic health conditions, including autism, epilepsy, and cerebral palsy, scaled back their participation in the workforce, resulting in an average loss of $18,000 a year for those families.² These families need more flexibility to continue earning a consistent income. Caring for a neurodivergent or disabled child can cost far more than caring for a typically developing child because of medical devices and therapies that may be needed.

4. Be an Advocate for Services for Children

Advocating for our neurodivergent or disabled child can be exhausting. It’s also necessary. The truth is, no one else is as invested in a child’s future as their parents, so it’s up to us to advocate for our child. But after years of doing the same thing-two steps forward, one step back-we can get burnt out. When others advocate for our children on our behalf, it is life-giving to us as parents. And it is also more effective because we also tend to be seen by some as “asking for too much” or being “pushy” because we “think (our) kids should have special privileges and advantages.” (Yes, this is our reality sometimes.) Also, when we, as a society, advocate for ALL children, our entire world benefits.

5. Stop Staring and Being Afraid to Ask Questions

This perpetuates the stigma of special needs. Some may disagree, but I would LOVE for you to be curious about my kids. They are amazing humans, and talking about them, even about their exceptionalities, doesn’t make me uncomfortable. The more we know about exceptional kids, the more we can help them thrive and feel they are worthy of being seen for who they truly are.

6. Build a Supportive Community

They say it takes a village, and they’re right! Having a supportive community to cheer us on, help us out, and support our physical and emotional needs, is essential. Is it possible to raise a neurodivergent or disabled child without a village? Probably. But it’s a lot easier when you have a community behind you. This can include offering to clean the house, do grocery delivery, bring us dinner, or just showing up for coffee and a chat.

7. Create More Inclusive Experiences

From inclusive playgrounds with wheelchair-accessible equipment and sensory-friendly gyms to quiet rooms at public attractions and sensory bags at the zoo, there has been a massive push in the past 10-plus years to create inclusive experiences. But more work must be done to support parents of special needs children.

Imagine spending $200 (or more) for your family to visit an aquarium. Then your sensory-sensitive child melts down within 20 minutes because there were too many people, the lights were too bright, the music was too loud, or the stingray tank was too stinky. In an inclusive experience, there would be a quiet or sensory room where you and your child could go to calm down. Then you can rejoin the group and continue making beautiful memories with your family. If that sensory room isn’t there, you would have to choose between asking your child to “power through” it, taking them to the car to calm down (maybe you could reenter or maybe not, depending on the policy), or taking the whole family home and lose that $200 and tarnish the memory.

Or imagine your youngest relies on a wheelchair and their siblings want to go to the playground. But you can’t find an inclusive playground unless you drive two hours away from home. You can take them all to the local playground and make the youngest sit in her wheelchair while the older kids play or trek all the kids on a four-hour roundtrip journey to play at an inclusive playground. It’s not about special privileges for neurodivergent or disabled children; it’s about everyone getting to participate in the way they can.

8. Create More Affordable Assistive Equipment

Whether you are buying medical equipment, sensory toys, weighted blankets, or climbing and jumping equipment, the costs increase quickly. Insurance may cover some things, but you’ll often pay a good portion out of pocket. If you don’t have the means to afford it, your kid may be without the tools to help them go from surviving to thriving. No, a trampoline might not be necessary for a child who seeks sensory input, but it could be the deciding factor in whether they jump off the back of the couch and break their arm.

9. Create Easier Access to Services

For neurodivergent kids, it’s often not as easy as seeing a pediatrician to get a diagnosis. Unless it is a textbook case of ADHD and nothing else (which, according to ADDitude Magazine, happens only about 20% of the time), the child will likely need a psychological evaluation.³ The psychologist will use the DSM-V (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) to determine what diagnoses to give your child. Unfortunately, there seems to be a widespread issue with the availability of psychologists able to do these evaluations promptly.

We are on a five-month waiting list to get our son a complete evaluation to see what is accompanying his ADHD and anxiety. Fortunately, we already have a diagnosis of ADHD, so we can get many services billed under that diagnosis rather than being stuck waiting for the support he so desperately needs. Unfortunately, many kids struggle every day because they don’t have an official diagnosis. And once they have an official diagnosis, they may have to wait another few months before seeing a therapist who can meet their needs. We need a significant increase in the number of students pursuing these educational degrees to alleviate the stress on a system that is not currently capable of serving our children.

10. Offer to Babysit

Having disabled or neurodivergent children can be exhausting at times, with advocating for them, running them from appointment to appointment, and tending to their physical and emotional needs. Sometimes it’s easy to forget that we are our own person, too, and our individual needs fall by the wayside. But finding someone to watch our children can be a tall order, depending on the severity of the disability and the accommodations needed. Sometimes we need a night (or day) out to relax and reconnect with our spouse or ourselves. Having someone we trust actively offer to watch our children can give us that much-needed time and reassure us that others also see our children as the beautiful gifts they are. Even if we don’t accept, it allows us to feel seen and heard.

Being the parent of a special needs child is a precious gift. But it can also be overwhelming at times. Being able to support parents of special needs children in various ways can be the key to keeping us from burning out and giving us the energy to keep going and advocating for our children. It may not seem like much, but knowing we are not alone can make a world of difference in our lives and our children’s lives.

Resources

1. https://www.census.gov/library/stories/2021/03.html

2. https://publications.aap.org/pediatrics/article/148/3/e2020035378/181089/

3. https://www.additudemag.com/