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 that 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.
Developmental Red Flags
If your child meets one or more of the following criteria, they may have a developmental delay or disability.
A regression in a previously learned skill – skills such as speech or fine motor should progress not regress, so if your child loses skills they had previously gained, this is cause for concern.
A delay in reaching a developmental milestone – all children do reach milestones on an individual timeline, but if your child is behind most of their same-age peers, this is cause for concern.
Atypical behaviors – behaviors such as lining up toys rather than playing with them, not responding to their name, not making eye contact, unusual movements such as hand-flapping or toe-walking, rigid routines, odd or atypical social interactions, any of these can be cause for concern.
If you notice any of the above, the following steps can provide a framework for how to proceed.
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.
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 is a federal resource to encourage healthy child development, as well as universal developmental and behavioral screening for children and support for their families and caregivers.
CDC Developmental Milestone Checklist and Tracker
The CDC has an online developmental milestones checklist as well as an app for your phone where you can follow your child's development.
Step 2: Evaluate Now
If you notice your child meets one or more of the three developmental red flags, what do you do?
Pediatrician - Immediately contact your child's pediatrician and request a referral for an evaluation with a specialist in your area of concern.
Developmental Pediatrician – Also, ask your child's 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.
Early Intervention - 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.
Exceptional Student Education - 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 can provide educational advocacy.
These evaluations can take time to schedule, and even more time for services to begin, so it is crucial 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 educate yourself in ways to help your child. Search for online bloggers, podcasters, and support groups in your areas of concern. Many industry professionals, such as those at Collaborative Corner, offer some services and support online at no charge.
Step 4: Find the Best Resources and Providers for The Diagnosis
It will take time and effort to find the best resources and providers, but your child's success depends on it. Research the most effective interventions and therapies for your child's needs. Call your insurance company and ask which providers they cover. Call those providers and make appointments to interview them to be sure you have aligned goals. Being selective about what therapies you choose and which providers you select can have a significant impact on helping your child reach their optimal level of success.
Step 5: Replace the Word "Never" With "Consider"
Being an advocate for your child involves replacing the word "never" with the word "consider." The world of developmental delays and disabilities often involves complex and overwhelming decisions such
as special needs education or general education, medication or natural supplements, in-center or at-home therapy, just to name a few.
Replacing the word "never" with the word "consider" means you will make these decisions considering all options available and selecting what fits best the needs of your child at this moment, understanding that may change over time.
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 higher risk than their neurotypical peers of suffering from depression and low self-esteem. Nurturing their strengths and interests can help to build pride and a positive self-image.
Identify 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. While some family members may be harder to reach, you must 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.
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
If you have questions, please reach out to us. Feel free to contact Amy Nielsen via email at anielsen@collaborativecorner.org or on our website at www.collaborativecorner.org.
Amy Nielsen
Creator/Owner of Big Abilities Blog and Podcast
Panelist and Parent Advocate
anielsen@collaborativecorner.org