She ran after me through the parking lot.  I froze.  The last time that I had seen this parent was when she was yelling at me about her daughter’s diagnosis.  I turned to face her and waited for the verbal onslaught.  I tried to remember how long it had been since that IEP.  6 years?  Why did she want to talk now?

“You’ve got to help me,” she pleaded.

“What?” I was shocked.

“You need to help me convince my husband that our daughter needs help.  You were right. I am so sorry.  But now she is in high school.  And she needs help. I don’t know what to do.”

I was speechless.

She was desperate…so we finally had the conversation that I tried to have six years prior when her daughter was in elementary school and she refused to accept the results of my assessment.

I have avoided this topic since starting this blog. 

I almost addressed it in my post on denial.

I did not.

I wrote about the easy aspect of denial – the denial about PROGNOSIS of the disability.

I avoided the more difficult aspect of denial – the denial about the DIAGNOSIS of disability. 

The roots of this denial are the same – unawareness and fear.  However, the consequences of the denial of DIAGNOSIS can delay services and interventions for the child, which makes this denial much more complicated and potentially damaging to the child.

When have I seen this denial?

• When parents deny permission for the school to evaluate the child.
• When parents refuse to accept consistent assessment results from a variety of professionals.
• When parents contest the eligibility category for services.

What are some of the reasons for this denial?

• Most assessments that occur after Kindergarten are initiated by the teacher rather than the parents. This changes the dynamic of the referral because the parent may or may not share the same concerns and generally the concerns that are discussed are occurring at school rather than home.
• Most parents do not know the what “typical” looks like for a specific age or grade.  They know what “typical” looks like for their child.
• Assessment results are often presented poorly and too quickly for parents to understand or digest the results. 
• Labels used for eligibility are harsh and unfamiliar.

What can be done?

• Always start with empathy.  Hearing that a child is not progressing as expected can be heartbreaking and hard to process, especially if done in large group setting. 
• Slow down and listen to the parents.
• Find a compromise that gently moves the parents forward toward assessment and acceptance.
• Give examples of typical behavior and/or academics so parents have a reference point.
• Practice explaining assessment results to people not in education and get feedback.  Find out how easy you are to understand. 
• Apologize for labels.  Explain their origin.  Talk about confidentiality of eligibility.

And if none of this works?

This is when it gets hard and sometimes ugly.

Especially if the child has significant learning needs that require intensive intervention or significant behavioral issues that may be negatively impacting other children. 

Especially if the parents are experiencing intense emotions.

Especially if there is pressure from staff and administrators to move the assessment or placement forward.

Especially if all other available interventions have been attempted.

Especially if the child is suffering.

This is when telling the truth is critical.

Truth telling in the face of denial and anger is difficult and scary. 

Truth telling in the face of denial and anger can feel cruel.

Truth telling in the face of denial and anger can lead to self-doubt.

But truth telling is the only option.

“You have to start with the truth. The truth is the only way that we can get anywhere. Because any decision-making that is based upon lies or ignorance can’t lead to a good conclusion.” Julian Assange

“When you want to help people, you tell them the truth.” Thomas Sowell

…

I learned a lesson that day in the parking lot with that mother.  When she was finally ready to let the truth in and let go of her denial, she wanted to talk to the person who told her the truth.  It took six years, but she finally saw me as someone she could trust.  I will always remember her parting words before she walked away.

“Thank you for trying to help my daughter.”

It is okay for parents to be in denial.

It is normal for parents to experience denial repeatedly.

Denial is a necessary, valuable and healthy part of grieving.