Parenting a child with developmental delays can be challenging. The good news is that help is available for your child.
Developmental delays in children — when a child does not reach certain developmental milestones by an expected age — can be overwhelming for many parents. They may have fears about their child’s education, learning disabilities, social interactions, and functioning in everyday life.
Here’s some great news—help is available.
As a Developmental-Behavioral Pediatrician, it’s my privilege every day to come alongside moms and dads seeking answers for their children’s often baffling behavioral, social, or learning issues.
What I’ve learned from experience and through Scripture is that each child, whether they have a developmental delay or any other kind of special need, is a unique person who bears the image of God and is valuable beyond words.
While that doesn’t mean the road ahead will be easy, there are ways you can access help for you and your child.
In the past, children with delays in speaking or reaching developmental milestones were often labeled “late bloomers.” Many developmental concerns were treated with a wait-and-see approach until a child reached kindergarten.
Today, research reveals that there are many clues, even in six to nine-month-olds, that can identify children at risk for delays, including autism. Studies also show that, for the most effective results, kids should be treated as soon as possible.
The term “early intervention” has gained traction and a sense of urgency because studies show that the developing brain is “plastic.” That is, the brain and connections within it can be molded and shaped.
The earlier action is taken to address developmental concerns, the more likely it is that the brain can change and respond positively to the intervention.
Early intervention doesn’t result in cures for developmental problems. But there are tools and methods that parents and therapists can use to change the course of a child’s development for the better.
Here are four steps that parents should take to get help and support for their child.
As early as the first days after birth, a baby can be assessed. The baby can be described as “easy-going,” “difficult,” or “slow-to-warm-up.” These categories of temperament can predict whether your infant will be easy to put on a schedule, adapt to solid foods, or whether she will act cuddly or cry excessively. Your baby is born with one of these temperaments or “basic operating styles.”
Child development experts use the term “goodness of fit.” This term refers to the compatibility between a child’s temperament and her environment. When applied to the interaction between parent and child, the goodness of fit can affect the early bonding experience.
It’s crucial to understand that goodness of fit isn’t a statement about your fitness as a mother or father, or whether you are a good parent. And it does not determine whether you will bond well with your child. (For example, “I’m having a tough time connecting with my baby right now so we must not be a good fit.”)
It simply means you may have to adapt your behavior to best accommodate your child’s needs and temperament. When you discover your baby’s temperament and needs, you will gain greater confidence in caring for your baby.
There are specific developmental milestones that infants and toddlers achieve as they grow. These developmental milestones fall within four key areas:
The Centers for Disease Control and Prevention offers excellent resources to help parents recognize normal developmental milestones.
They also offer a milestone tracker app you can download. A number of other apps are available with descriptions of skills and abilities a child should exhibit around various ages.
The ages for each skill area are not exact. Rather, the developmental milestones have been set to reveal developmental “red flags.” When parents notice these indicators that development may be lagging they can take action and seek help.
Note that if your baby was a “preemie” (born prematurely), for the sake of tracking developmental milestones you can add the number of weeks she was early to the milestone age marker until he or she is two years old.
A diagnosis is not a label that defines your child, their limits, or their worth. However, an accurate diagnosis for your child will help you in finding the care they need. This includes the right therapies and educational accommodations. It will also give you insights into their strengths and weaknesses.
Generally, if parents notice that something seems different about their child’s development, or that they are not reaching developmental milestones, they can self-refer or ask their child’s medical provider to make a referral. A team of therapists then typically gathers information from you about your child. They can make a visit to your home to assess your child’s developmental progress.
For example, screening questionnaires are usually done at ages 18 and 24 months. These questionnaires can show if a toddler is at risk for autism. If the child is at risk, referral for further specific evaluation is critical.
Unfortunately, not all toddlers are screened, the results may not be clear, and fewer are referred, even with the current interest in the rise in autism cases. This leaves it to parents to keep pushing for answers if they are concerned about their child’s development.
Most school districts have a contact for Early Intervention Services (EI) for ages birth to 36 months. The CDC’s “Learn The Signs. Act Early” program may be very helpful for parents of young children. They seek to take action sooner rather than later if they have concerns about their child’s development. You can check into free services and resources that are available in your state by going to the CDC’s website.
Speech therapy, occupational therapy (for daily living skills, sensory processing disorder, balance problems), physical therapy (for delays in walking, motor problems), and behavioral therapy all can help your child to grow and learn to feel capable faster than without those interventions.
More than that, by getting help early, parents can receive the tools they need to understand their unique child and gain confidence and hope for daily life.
A diagnosis typically begins with your observations. For example, most babies roll over front to back between four and five months of age. If your infant is six months old and has not yet done this, it is important to seek answers from a medical professional.
If you notice that your child is behind in any of the four key areas of development listed above (gross motor, fine motor, speech, and social skills), bring this to the attention of your child’s primary care provider and ask for a referral.
Surprisingly, family members and even medical personnel can slow down the process of getting help for a child with developmental delays. This can happen as a result of “watch and wait” hopefulness, as parents and doctors look for improvements over time with a child’s speech, walking, or ability to make good eye contact.
The challenges of a developmental delay can be hard to face head-on. Medical professionals don’t like to give difficult news and no parent wants to hear it when it comes to their child. Regardless, it’s crucial to catch developmental delays early so that families can get help.
On a side note, some conditions like ADHD show a strong inheritance from parent to child. If you or your spouse have ever been diagnosed with ADHD or other concerns, let your child’s medical professional know. It may help speed a diagnosis for your child.
An accurate diagnosis is important because it’s not always obvious what may be keeping a child from reaching a developmental milestone.
Toddlers older than 18 months who are not using single words may have trouble hearing. They may have difficulty forming sounds due to low muscle tone, or they may not be interested in communicating with others due to autism. Such a wide variety of possible causes for speech delay requires careful assessment of hearing, speech abilities, and social interactions. Only then can your child get the intervention they need.
After age 3, children with developmental delays can continue with early intervention services. These services through the local schools are called individual educational plans (IEPs) or 504 accommodations. This latter term is based on section 504 of the Americans with Disabilities Act, a federal law that ensures every individual’s right of equal access to educational and occupational opportunities.
The Center for Parent Information & Resources provides excellent material on how to obtain help for your child in the school setting. At CPIR’s website click on the Resources tab to find information about IEP’s, 504 accommodations and more.
As a Developmental-Behavioral Pediatrician, I’m often asked to write letters of support so that a child can receive accommodations in school. The accommodations I will ask for depend on the child’s developmental concerns and medical diagnosis.
Medical diagnoses that may call for 504 accommodations include:
School staff generally creates an IEP after an extensive eligibility review to assess for significant learning disabilities, intellectual disability (lower IQ), or other educational problems that might require changes in curriculum or teaching methods for the student.
A medical provider or a parent can request an IEP eligibility evaluation. The school must respond to the request within a specified time period. In some areas, schools may provide additional support or modifications in the teaching plan through extra tutoring, smaller groups within a class without a formal IEP process, or a “response to intervention” (an approach that looks at educational interventions or teaching procedures to determine if they are effective; if they’re not, the school can try something different).
Each child has a complex story, including particular life events, genetic factors, and strengths and weaknesses. Keeping that in mind, when working with a child with a possible developmental delay, I do a careful physical exam to look for traits that may be part of a genetic syndrome or disorder. I spend time with the child in the office doing back and forth play, imitation games, making requests, drawing, and building things. All the while, I am looking for that direct eye contact that says we are making a connection. I gain information from parents and teachers through questionnaires and surveys that can reveal additional symptoms of ADHD, autism, anxiety, or past trauma.
If a child can get an evaluation like this from a pediatrician, family physician or nurse practitioner, neurologist, psychologist, or developmental specialist, then a diagnosis and appropriate plans can be created.
Let’s say that a 5-year-old boy has delayed speech, is shy around other children, has a weak pencil grip, and gets overwhelmed in noisy environments. A medical evaluation shows that he has developmental coordination disorder, developmental speech delay, social anxiety, and over-sensitivity to noise. He would benefit from 504 accommodations that include:
As he continues in school, if he has a lot of difficulties learning the alphabet, sight-word lists, or sounding out new words, he may need specialized reading help in the form of an IEP rather than just the 504 accommodations.
Attention deficit hyperactivity disorder has three main forms – predominantly inattentive, predominantly hyperactive/impulsive, and combined.
Some students with ADHD are easily distracted and seem to be off in their own world. Others are generally quiet; signs aren’t noticed until later in school when their workloads increase and their grades go down. The more common student with ADHD is distractible but also restless and fidgety. They tend to move about the room, talk out of turn, and zoom from one activity to another. About half of the students with ADHD also have difficult-to-read handwriting.
Most students with ADHD benefit from occupational therapy and 504 accommodations in school. Medications may be helpful but are not always necessary as a student matures. Elements of a 504 plan for a child with ADHD might include:
If a child with ADHD is not treated with understanding and appropriate accommodations in school it can lead to academic struggles, feelings of hopelessness, and even depression. This is one reason why getting a diagnosis can be vital for your child. More information and excellent resources for families dealing with ADHD are available through CHADD and ADDitude.
In recent years the widely encompassing term autism spectrum disorder (ASD) replaced the condition autism. ASD includes less-severe conditions such as Asperger’s syndrome through more severe forms of autism. Still, you will probably hear autism and ASD used interchangeably.
The core symptom of ASD is difficulty with social communication, which can be divided into three areas:
Additional features of a person with autism are repetitive and restrictive behaviors, including:
There are additional factors that go into a diagnosis of autism spectrum disorder, but these are the main themes.
If a person does not have difficulty with social communication, they don’t meet the criteria for autism. This means that if a child demonstrates delightful back and forth communication they don’t have autism based on current guidelines, even if they refuse to eat certain foods or can’t stand wearing scratchy clothes.
A 504 accommodation for a child with autism might include:
On a final note: When you’re raising a child with a developmental delay, it’s easy to focus so much of your attention and energy on your child that you ignore your own needs.
For your own sake as well as your family’s, you need to care for yourself.
© 2019. Annelise Spees, MD. All rights reserved. Used with permission.
© 2019. Annelise Spees, MD. All rights reserved. Used with permission.