How to get a behavioral diagnosis for your child

Since Ezra received his ADHD diagnosis, I’ve had several friends and readers come forward with questions and concerns about their own children.

“How did you know when to look for a diagnosis?” 

“How did you know it was more than just ‘typical’ toddler problems?”

“I think there’s something wrong with my child. What do I do?”

These are really good questions, and I wish there was a more clear-cut answer. Diagnoses such as childhood anxiety, adjustment disorder, oppositional defiant disorder, ADHD, sensory processing disorder, aspergers, autism, and others are often “invisible” at first, especially in younger children. There’s also a lot of overlap in the symptoms, as well as comorbidity in the diagnoses. Sometimes, it’s really hard to know what’s going on with your child – if anything.

I’m not a professional. I’m just a mom who has gone through this and asked these questions myself. I’d like to take this post and share some things about our diagnosis process and give some ideas for others in similar situations.

How Did We Know We Needed a Diagnosis? Our Clues

• Ezra’s consistent inability to cope and behave across settings. By January / February of 2014, everywhere we took Ezra we received reports of negative behaviors. (Church, two Bible study groups, and the gym.) When we enrolled him in private preschool in hopes of giving him a more solid routine, the behaviors not only continued, but escalated.

• Recommendations of other “special needs moms” that there could be more going on, including Ezra’s Sunday School teacher who suggested we take Ezra to a therapist and my two friends Katie and Kathryn, whose sons have autism.

• Seeing more similarities between my son’s behaviors and those of children who have behavioral diagnoses than between his behaviors and those of typical children.

• A sense of hopelessness in parenting. I dreaded being home with him, I dreaded taking him out. We were constantly overwhelmed and felt like nothing we were doing was working.

• A sense of perceived ‘helplessness’ from care providers and teachers. Many people who cared for Ezra in different settings tried to offer us suggestions, most of which we had already tried. Seeing inability of his teachers, principals, and childcare workers to know “what to do with him” when his behaviors escalated was a big clue that we were going to need additional help. Before Ezra returned to preschool this fall, his behavior in their summer program had already been discussed as resulting in possible future expulsion because his needs were beyond the scope of what the staff felt like they could deal with.

What You Can Do To Get a Diagnosis

Document:

Sit down with a document on your computer and start writing down anything you think could be a symptom of an invisible behavioral or other diagnosis. This isn’t just helpful for providers, but also for you as a parent. When I sat down and did this for my son, it was very eye-opening for me. All of the little things that I wasn’t sure if they were typical kid quirks suddenly added up to something bigger. (You can view the document I wrote for Ezra last summer here.)

What to include:

• Any frequent or recurring illnesses
• Consistent sensory-seeking or sensory-avoiding behaviors
• Any consistent sleep disturbances such as night-waking, night terrors, and early rising
• Any periods of unexplained crying in infancy
• Any difficulties with feeding, picking eating, or sensory avoidance of foods
• Negative behavioral reports from teachers, childcare workers, and baby sitters
• Food and environmental allergies
• Delayed or skipped milestones
• What parenting strategies have or haven’t worked
• Any family structure changes such as moving, deployments, new schools, new siblings, or divorce (*This was key for us in receiving Ezra’s adjustment disorder diagnosis)

Take videos:

I know when you are dealing with a meltdown, the last think you probably think to reach for is your phone, but recording some of Ezra’s meltdowns (and how I tried to deal with them) on video was incredibly helpful in getting Ezra admitted to his behavioral therapy program.

Seek professional help:

There are several different ways to get a diagnoses and extra help and therapy for your child. We used a combination to receive the answers we received.

• Get a referral (or self-refer) to a Developmental Behavioral Pediatrician (DBP). Pediatricians, as wonderful as they are, often do not have the training that DBPs have and are more quick to dismiss parental concerns as a mom spending too much time on Google. (Yes, I had a resident pediatrician tell me this!) Learn what a DBP is and seek one out in your area.

(Ezra finally seeing our DBP after 8 months of seeking answers. We were referred to the DBP two months before going ahead with seeing him. This is my greatest regret in going through this process!)

• Look up “early intervention” and “head start” programs in your area. Check out these links to learn more about what these programs can do for your family. The services will vary from state to state.
  • WHY EARLY INTERVENTION IS THE BEST THING YOU CAN DO FOR YOUR CHILD
  • About Early Head Start

• Contact your local school district to see if they offer special education screenings. Ezra was able to receive psychological testing, IQ testing, speech and language evaluations, and more through the school district. Although we walked away from their first assessments of him receiving no special services, a year later they placed him in a special needs preschool class with occupational therapy services.
  • Read more about this part of our journey by reading these posts, I felt like a good mom today and Believing in my son {an update}

To learn more about how to know if certain behaviors are “just a phase” or an indicator of something bigger going on, I refer you to this post from Lemon Lime Adventures: Troubling Behaviors| Is It Just a Phase?

Also check out these great posts from Every Star is Different:

I THINK THERE’S SOMETHING WRONG WITH MY CHILD: A GUIDE TO PEDIATRIC SPECIALISTS

PREPARING FOR AN APPOINTMENT WITH A DEVELOPMENTAL PEDIATRICIAN

A final note about diagnoses and labels:

Despite the title of this post, I believe that every child is unique and beautiful. A diagnosis, “delay,” or label is not the end of the world and I don’t view it as a negative thing. While many people eschew labels, I feel that they are incredibly helpful and open up a whole world of services (such as therapy and special education), resources, and community for families with children who face challenges. At least this was the case for us.

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Moms who have received diagnoses for your children, please comment. I’d love your input on how you went about getting your children help!