Donna Cordon, a kindergarten teacher in Frisco Independent School District, has an integrated class of general education, English as a second language (ESL) and special education kids. She speaks lovingly of her “little friends” and their parents. “Right from the beginning, I want to help parents feel that I’m taking care of their baby.”
Special needs professionals who love their job tend to use that kind of language. They understand that parents can be overwhelmed with the massive task of daily care. But that’s just the start. They regularly see you wondering how to determine therapeutic and educational priorities while wrestling with conflicting ideas about what’s best for your child. And they know that getting the help and support you need often falls to the bottom of the list.
We asked Cordon, along with Christa Martinez, a special education teacher; Ashley Bower, an occupational therapist and the owner of Envision Hope Pediatric Therapy; Holly Willis, a licensed speech-language pathologist at Small Talk Pediatric Speech Therapy; and Mary Villareal, an occupational therapist and founder of Journey Learning Center and Journey Pediatric Rehabilitation; to share their experiences.
Because knowledge is power, here are a few things they want you to know:
1.We’re on the same team.
“The most important thing for parents to know is that we want the same thing, which is for your child to be as functional and independent in the real world as possible,” says Christa Martinez, a special education teacher.
This partnership requires a great deal of communication. The more the special needs professional knows about what’s going on in your life and in your child’s life, the better. “I want parents to contact me multiple times a day, if needed,” Martinez adds. “We need to be on the same page.”
Cordon echoes that sentiment: “Constant communication is important because the reinforcement system between school and home has to be in sync,” she says. “It helps the kids learn better. The kids need to know we’re in communication too. It keeps them from trying to play us against each other. I’ll take the communication any way parents want, including sticky notes! We’re on your team. We’re your cheerleader and coach.”
Sometimes parents have had to do battle to get what their kids need in previous environments. “We know you may have had some not-so-fun experiences. Going in with an open mind can help get the relationship off on the right foot,” Martinez adds.
“I’ll take the communication any way parents want, including sticky notes! We’re on your team. We’re your cheerleader and coach.”
2. Your child’s first job is play.
When play isn’t easy or doesn’t occur naturally, parents can inadvertently deprioritize it. As an occupational therapist, Ashley Bower is concerned about the reduction in play and movement she sees all kids experiencing. “Over the years, academics have been pushed harder in the schools. Kindergarten has changed dramatically since we were kids,” she says. “Parents deal with a lot of competitive pressure and comparisons, but in my opinion, the most important thing is allowing a child to be a child, letting them do things when they’re developmentally ready.”
Bower ties this idea to her job title: “[A] kid’s occupation is playing and learning,” she says. “Playing is primary, because it’s how they learn. Due to technology and more pressure to push kids ahead, even neurotypical kids’ developmental skills aren’t up to par. They don’t have the core and upper body strength that they should, which are precursors to fine motor skills like holding a pencil. All kids need more opportunities for unstructured play, climbing, using their bodies, digging in the dirt.”
Speech therapist Holly Willis agrees. “Parents often set aside learning times, but it’s better to pick up a toy and show the child how to play. Incorporating learning into play is more effective than trying to get them to sit still for a lesson,” she says.
“A lot of parents actually need to learn how to play, too,” she adds.
Willis believes that developing functional language skills—the ability to convey their wants and needs—should be your child’s first learning priority and that play is the best way to accomplish that as well. (See sidebar at direction.)
3. No matter their level of disability, every kid needs to be included in the mainstream world.
Parents sometimes avoid social settings because of their child’s severe social challenges. “Socializing is the key to helping students feel more comfortable in the classroom,” says Martinez. “And by that, I mean being in clubs or having play dates––not just therapy sessions. Sports, such as the Miracle League, and scouts are incredibly beneficial. It may be hard or even embarrassing, but kids’ level of comfort in groups will never improve without practice.”
In her class, Cordon has seen that the blending of different developmental and educational levels helps all the groups, not just the ones with special needs. “Gen ed kids experience the diversity of different abilities that they will see in the world. ESL students are encouraged to actively participate and learn from their peers, which builds confidence and relationships. Special needs children benefit from a less restrictive environment for learning and socializing.”
Just as racial diversity can foster compassion and enlarge our understanding and ability to collaborate with peers from different cultures and backgrounds, spending time with kids with different abilities cultivates citizenship in general and prepares them for an increasingly global world.
4. Disciplining non-neurotypical children is one of the best things you can do for them.
It’s not uncommon for parents to experience guilt at not managing as well as they’d like. This often prevents parents from holding their child accountable to limits and expectations. Even parents of kids without disabilities struggle with this. “But if kids don’t learn boundaries and rules while they’re kids, it’s going to be much harder as an adult,” says occupational therapist Mary Villareal. “Set limits and stick with it!”
Special care professionals stress that learning can’t even begin until your child’s behavior aligns with the standards set for a particular environment. “Parents are very concerned about their kids’ academics,” says Cordon. “But progress is not measured by academics. Their behavior is the first thing we work on. It sets a foundation for better academic learning. And positive reinforcement is the most effective form of discipline,” she adds.
“But progress is not measured by academics. Their behavior is the first thing we work on. It sets a foundation for better academic learning. And positive reinforcement is the most effective form of discipline.”
For parents who are worried and apologetic about their child’s behavior, Martinez notes that after a few weeks, kids with special needs often behave better for someone else because of higher expectations and consistent reinforcement structures. “They’re very routine and procedure-oriented,” she says.
5. Behavioral and physical issues may be related to a sensory processing disorder.
“I wish more parents understood sensory processing disorder,” says Bower. “It can be an underlying cause of the behaviors a child is presenting, such as the inability to sit still or tolerate sound, touch or movement.”
She explains that in addition to our five senses, we also have two sensory processing systems: proprioception, our sense of body awareness, and the vestibular system, which governs our sense of movement in space through the auditory system. “It’s not widely known that delayed speech may be tied to these systems,” she says. “I once worked with a nonverbal child who became verbal after working in the gym. Movement has the power to impact development and behavior.”
Sensory processing disorders are an overlooked factor in many diagnoses, with attention deficit hyperactivity disorder being a common example. “Wiggly kids don’t necessarily have ADHD,” Bower adds. “In fact, in my opinion over 90% of kids diagnosed with ADHD have a sensory processing disorder too, or instead. Some kids may just need more opportunities to move. Get them involved in Little Gym, Gymboree, sports, martial arts, swimming or gymnastics. Get them off the devices!”
6. Be an advocate for your child.
Sometimes parents are afraid to speak up. “You know your child better than anyone,” says Martinez. “If there’s something your child needs, feel free to bring it up. There may be things we’re unable to do, but always ask. We want to make sure you understand everything.”
Advocating for your child may sometimes require extreme measures. Villareal recalls a girl with cerebral palsy she worked with years ago. The girl was being denied the right to attend a public school. Her mother took her grievance all the way to a federal court to get this decision overturned. “She recently tracked me down in another state to share that her daughter had graduated from college!” Villareal says.
To succeed with their unique set of challenges, kids with special needs can only benefit from fearless and determined parents who will stand in whatever gap presents itself. For all the wonderful and caring professionals you will encounter, there may still be occasions when you have to step up and advocate for your child’s needs.
7. Don’t delay getting help because of your fear of a diagnosis.
Dread of a diagnosis is a common driver in parents’ reluctance to seek out help. They can be afraid that a diagnosis will follow them their whole life. “That’s not how it works,” Willis reassures. “It’s important not to delay seeking services if you suspect something; early intervention makes a big difference in your child’s progress. Don’t keep waiting for them to outgrow it. If a therapist loves what they do, it opens up a whole world for your child.”
Similarly, parents aren’t always keen on special accommodations, either. Preferential seating, extra time to complete work, or leaving the classroom to finish work can make parents feel like their child is being labeled. If your child has an educational need, don’t be afraid to ask for accommodations. “Accommodations are nothing to be ashamed of,” says Cordon. “Kids may really benefit from that extra support. And accommodations can be removed as they’re no longer needed.”
8. Occupational and speech therapy are great places to start to pinpoint your child’s needs.
Because pediatricians only look at a few developmental benchmarks, parents who suspect delays in their children might feel that their concerns are not being addressed. Bower says, “Trust your gut and seek help elsewhere. The school’s occupational therapist is only going to look at fine motor skills. I wish more parents knew how much can be impacted by occupational therapy and that most insurances pay for it. We make a big difference in kids’ lives.”
Occupational therapists can have great insight into the direction you might need to go for your child’s specific challenges. They work with social skills, play, daily living skills, feeding, dressing, handwriting, sensory systems, learning disabilities, strength and coordination, even speech. In fact, there is some overlap between occupational and speech therapies.
“People would be surprised at what speech therapists can do,” says Willis. “We are trained to diagnose and treat speech, language, fluency and feeding/swallowing disorders. We diagnose childhood apraxia of speech. We also explore external factors such as sleep, nutrition and any emotional components kids and parents may be facing. We can recognize the need for early intervention.”
9. Keep high expectations for your child.
With a diagnosis, it’s normal to feel discouraged and even hopeless about the so-called realistic outcomes parents may be advised to expect, but Villareal wants parents to remain hopeful and pursue all the help they can.
“I’ve seen some great success stories. One boy I worked with who had Asperger’s (before it was an officially known diagnosis) is now a preacher with three parishes,” she reveals. “Another child who was expected to remain in a vegetative state his whole life graduated from college. I even saw a child who was never expected to read or write eventually go to medical school.”
10. It’s OK if your child fails.
Watching our children fail isn’t easy for any parent, but it can be particularly difficult for those who have children with special needs. Cordon notes that parents want to take away difficult obstacles for their children, but that in the real world, this isn’t possible.
She encourages parents that it’s OK if a child fails or gets frustrated or disappointed. “It helps them become resilient, determined and motivated,” she says. “We need to help them build these characteristics and behaviors so they can learn to navigate through the world around them.”
She emphasizes that all kids, not just those with special needs, need to be loved, to play and to make mistakes. “Encourage them,” Cordon says. “Let them feel it.”
11. Get the support you need.
Your child’s caregivers care about you too. They see that even the most intentional parents can find themselves forgetting the oxygen mask directive, which is to say: You can’t take care of your children well if you don’t take care of yourself.
It’s easy to deprioritize yourself when your time is stretched to the breaking point. It might seem impossible to fit in a moment for yourself, but, increasingly, time management experts cite the increase in productivity and effectiveness—and reduction in stress—when we take breaks and care for our physical and mental needs.
We know that a healthy diet, exercise, meditation practices and occasionally stepping outside your child’s world to immerse yourself in something you love are foundational tactics for long-term effectiveness.
But, at the same time, their world is your world and no one understands it like others with similar concerns. “Find support groups that focus on the specific challenges your child has,” says Willis. “And you may need more than one if your child has multiple diagnoses.”