If you have a child with autism or ADHD or other developmental disabilities, or if you suspect they do, you cannot wait for resources to come to you.
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 gets wider and wider. It’s a race against time, but it’s a race you can win.
My son is four years old and has ADHD and autism. 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 he was stuck and he couldn’t find that second word. 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 that wasn’t normal. Now his issue 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 thing to look for are behaviors that don’t seem typical for a child that age. Behaviors such as not making eye contact or not responding to their name, or repetitive behaviors such as lining up toys or flapping the arms. If you see any of these red flags in your child, a regression, a delay or anatypical behavior, it’s time to move quickly. The following steps can help serve as a guideline of how to connect your child to not only the right resources, but the best resources.
Step 1: Monitor Their Milestones
In order to know if your child is meeting their developmental milestones within normal range, you need to educate yourself. There area great deal of online resources available. One, called the Ages and Stages Questionnaire,is a screening tool used for children between the ages of one month and five and one half years and is designed to screen your child in five areas: communication, gross motor, fine motor, problem solving and personal social.
Another, called 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.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.
These are just a few of the great milestone monitoring resources you can find online to help you know where your child’s developmental strengths and weaknesses are and if there is an area of concern.
Step 2: Evaluate Now
When you are monitoring your child’s development if you do notice a red flag, what to do you? Immediately contact your pediatrician. Make an appointment and voice your concerns and insist on a referral for an evaluation. In addition, ask the pediatrician for a referral to a developmental pediatrician.
Developmental pediatricians are experts in children’s developmental milestones and can diagnose other developmental disabilities such as ADHD and Autism. Furthermore, if your child is under the age of three, try to search online and find your state’s Early Intervention program and call them for an evaluation. Early Intervention is free in all states.
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. If you child is over age three, contact your county’spublic-school system and ask for an IEP (Individualized Education Plan) evaluation.
Children ages 3-5 can receive services in an ESE Pre-K classroom and of course if they are school age the school must provide services if they need them. All these evaluations can take time to schedule and then even more time for services to begin which is why it is so important to act quickly.
Step 3: Don’t Wait During the Waiting Period
The time between waiting for evaluations and services can present a valuable opportunity. This is time that YOU can use to start learning how to help your child yourself. When we were in the initial evaluations waiting window, I found so many online bloggers and podcasters and YouTubers related to my child’s specific challenges.
I would listen to a video or podcast each morning as I was getting ready for the day to learn ways to help my son. Take full advantage of the fact that many professionals offer their online resources for free. By the time my son started receiving services in speech, occupational and behavior therapy, I had a good grasp of what to expect and how to also offer support in our home.
Step 4: Find the Best Resources for The Diagnosis
All resources are not created equally. The first speech therapist my son was seeing was great. Then one day she was gone. The center assigned him to another a speech therapist whose strategies for getting my then two-year-old to speak was to strap him in a chair and dangle flash cards in front of him.
Because of all the research I had done, I knew this was not best practice in getting a developmentally delayed toddler to progress in functional communication. It will take time and effort on your part to find the best resources. Call your insurance company and ask which providers they cover.
Then call those providers. Make appointments to interview them. Also, non-profit organizations, such as Autisms Speaks or CARD (The Center for Autism and Related Disorders) are great resources to help connect you with the best providers in your area and what to look for in a provider for your child’s needs.
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Step 5: Never Say Never
I’ll never medicate my child. My child will never need behavioral therapy. I hear people say things like this all the time. Being an advocate for your child means the word “never” doesn’t exist. The word you use in place is “consider.” You need to 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 Autism.
Do I wish he didn’t need medication and was in a neurotypical school setting? Of course. Today he went in for a routine evaluation with his developmental pediatrician. She was delighted by his progress. At only 4 years old, he has shown more improvement than any of us anticipated and the prognosis for him to be able to blend in with his neurotypical peers and eventually not need medication is looking more and more possible. Studies have shown that the earlier children who need medication take it, the shorter the time they need it.
The younger they are when they receive intervention, the better the chance for them to blend in with their same age peers. Be willing to trade the word “never” for the word “consider” as you make decisions in how to best help your child thrive.
Step 6: Identify Strengths and Nurture Them
What if all day, every day you were forced to work on what you struggle with? How depressing would that be? Autism Self Advocate Temple Grandin says for children with developmental delays, nurturing their strengths is as important as helping them overcome their challenges. Children with developmental disabilities run a very high risk of suffering from depression. Nurturing their strengths and interests can help to boost their self-esteem.
My son is still young, but we already see areas of strength and we consistently praise and give him opportunities to develop them. For your child maybe they love art and drawing or music or sports, whatever it is encourage it.
Step 7: Educate Your Family
Your family can be a great resource. It is important that you educate them as much as possible, so they understand your child’s strengths and weaknesses and have realistic expectations. I’ve heard parents of children with developmental disabilities, often 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 and they begin to rally around your child as an advocate just like you.
Step 8: Never Quit Learning
You are your child’s best resource. You. Their success depends on how hard you advocate for them. I spend hours each week either on the phone or researching online whatever our newest challenge is or new medications or supplements or research or just any current topic related to my son’s ADHD or Autism, and I learn something new every single day.
Join online communities, join local support groups, make friends with other parents who have a child with the same diagnosis as yours. Take parenting classes for parents of special needs kids. You must make it a personal mission to be the first line of defense for your child. You can’t rely on a doctor or therapist or counselor or program or 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 up to date on the newest in research and support. It is that important.
This article was featured in Issue 99 – Navigating Relationships With Autism