8 Steps to Immediately Take if You Suspect Your Child May Have a Developmental Delay or Disability

If you suspect your child may have a developmental delay or disability, the time to act is now. Each day that goes by is valuable time you can’t get back. Each day that goes by is a day of intervention or therapy your child isn’t receiving. Each day that goes by the gap between your child and their optimal level of success widens. It’s a race against time, but it’s a race you don’t have to lose.

Our Family’s Experience

My youngest son is five years old and has a trio of diagnoses. He was typically developing until around 18 months when I noticed a regression in speech. It wasn’t huge. It was literally one word. One morning as his dad was leaving for work, he said, “Bye, Dad.” It was his first time speaking a two-word sentence, and I was so excited.

The next day something very different happened. As his dad was leaving for work, he said, “Bye…. Duh.” It was as if that second word was stuck. He was scheduled for a well check with his pediatrician just a few days after, so I told her about it. She wasn’t alarmed, but I insisted that I wanted a speech evaluation. I knew speech in toddlers should progress, not regress.

Over the next year, he was diagnosed first with Childhood Apraxia of Speech. A few months later, severe Attention Deficit Hyperactivity Disorder and by year’s end, a diagnosis of Autism Spectrum Disorder would tie everything together.

Developmental Red Flags

My son’s first red flag was a regression in a previously learned skill, speech. But other things to look for are a delay in meeting developmental milestones. So maybe your child isn’t speaking at all or very little. Another red flag is behaviors that don’t seem typical for a child that age; such as not making eye contact, responding to their name, or repetitive behaviors such as lining up toys or flapping arms.

If you see any of these red flags in your child:

  • a regression in a previously learned skill
  • a delay in reaching a developmental milestone
  • an atypical behavior

It is time to move, and time to move quickly. The following steps can help serve as a framework in how to proceed to connect your child to the services they may need.

Step 1: Monitor Their Milestones

To know if your child is meeting their developmental milestones within a normal range, you must know what that range is. There are many online resources available to help.

Ages and Stages Questionnaire

The Ages and Stages Questionnaire is a screening tool used for children between the ages of one month and 5 ½ years and screens your child in 5 areas:

  • communication skills
  • gross motor skills
  • fine motor skills
  • problem-solving skills
  • personal-social skills

Birth to Five Watch Me Thrive

Birth to Five Watch Me Thrive is a federal resource to encourage healthy child development, universal developmental and behavioral screening for children, and support for their families and caregivers.

CDC Developmental Milestone Checklist

The CDC has a developmental milestones checklist and even an app for your phone where you can follow your child’s development called the Milestone Tracker.

Step 2: Evaluate Now

If you notice a red flag, what to do you?

  1. Immediately contact your child’s pediatrician. Insist on a referral for an evaluation with a specialist in your area of concern.
  2. Ask the pediatrician for a referral to a developmental pediatrician. Developmental pediatricians are experts in children’s developmental milestones and can screen children for developmental disabilities such as ADHD and Autism Spectrum Disorder. It is important to rule these diagnoses in or out so proper therapy and interventions can begin as soon as possible.
  3. If your child is under the age of 3, contact your state’s Early Intervention program. If the Early Intervention team believes your child needs any services (such as speech, occupational therapy, physical therapy, or behavior therapy), they will provide them to your child free of charge.
  4. If your child is over the age of 3, contact your county’s public school system. Ask for an IEP (Individualized Education Plan) evaluation. Children ages 3-5 can receive services in an ESE PreK classroom, and if they are school-age, the school must provide them with any services they need. Inviting an Educational Advocate to attend IEP meetings is a great idea. The advocate will work with the IEP team to ensure the IEP meets your child’s needs. Collaborative Corner for Exceptional Children, a non-profit organization that provides advocacy and other free services to families of special needs children, is a great place to begin your search.

These evaluations can take time to schedule and then even more time for services to begin, so it is important to act quickly.

Step 3: Don’t Wait During the Waiting Period

The time between waiting for evaluations and services to begin is a valuable opportunity. This is time YOU can use to start learning how to help your child. Search for online bloggers, podcasters, and support groups who share content in the areas your child may be struggling. Many industry professionals, such as those at Collaborative Corner, offer some services and support online at no charge.

The time I spent educating myself before my son started receiving services gave me a good grasp of what to expect, what best practices looked like in those disciplines, and how to offer support in our home.

Step 4: Find the Best Resources for The Diagnosis

My son’s first speech therapist was great. Then one day, she was gone. The center assigned him to another speech therapist whose method was strapping my then two-year-old in a high chair and dangling flashcards in front of him. As a result of the research I had done prior, I knew this was not best practice, and it was time to look for a new speech therapist that used a play-based approach.

It will take time and effort to find the best resources and providers, but your child’s success depends on it. Call your insurance company and ask which providers they cover. Call those providers. Make appointments to interview them. Also, non-profit organizations, such as Collaborative Corner, are a great resource to help connect you with the best providers in your area.

Step 5: Replace “Never” With “Consider”

I’ll never medicate my child. I’ll never place my child in behavior therapy. I often hear parents make comments like these. But, being an advocate for your child means the word “never” doesn’t exist. In its place, use the word “consider.” You must consider every option available for your child to achieve their optimal level of success. 

My son takes medication for his ADHD symptoms and is in a fulltime 1:1 ABA (Applied Behavior Analysis) center for his ASD. Do I wish he didn’t need medication and could be successful in a mainstream school setting? Of course. But the decisions I make are based on his needs in this moment and on the recommendations of the team of professionals we trust, not my wishes.

Replacing the word “never” with the word “consider” as you make decisions for your child will set them up for the best outcome possible.

Step 6: Identify Strengths and Nurture Them

What if all day, every day, you were forced to work on your struggles? The days would be long and discouraging.

Autism self-advocate Temple Grandin says for children with developmental disabilities, nurturing their strengths is as important as helping them overcome their challenges.

Children with developmental disabilities run a high risk of suffering from depression and low self-esteem. Nurturing their strengths and interests can help to build pride and a positive self-image. 

My son is still young, but we already see areas of strength, and we offer consistent praise and opportunities to develop them. Recognize your child’s strengths and passions, and encourage them, encourage them big!

Step 7: Educate Your Family

Your family can be a great resource. Educate them on your child’s challenges and strengths, so they have realistic expectations for your child. Invite them to doctor and therapy appointments, so they hear firsthand from the professionals how to offer their support.

Some parents of children with developmental disabilities attempt to cover up or hide a child’s diagnosis from family due to fear of judgment or denial. I agree some family members may be harder to reach but keep trying. Your child’s truth is something you never want them to feel ashamed of. Furthermore, once you get your family on board, they’ll hopefully begin to rally around your child as an advocate just like you.

Step 8: Never Quit Learning

You are your child’s best resource. Their success depends on how hard you advocate for them.

You must make it a personal mission to be the first line of defense for your child. You can’t rely on a doctor, therapist, counselor, program, supplement or medication to be the fix.

It starts and ends with you—the parent. You need to become an EXPERT in your child’s diagnosis and continually keep yourself updated on the newest in research and support. It is that important.

Until you have a child with special needs, you have no idea the depth of your strength, tenacity, and resourcefulness. – Author Unknown

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Amy Nielsen lives in Orlando, Florida. She is the proud mother of four children ranging in age from 3-30! She and her husband, Brent enjoy sports and traveling. Amy is a former teacher with 20 years experience, a freelance writer, and special needs advocate. Her mission is to help educate and empower families of children with disabilities to focus on their child's interests and strengths.