Doing some research and helping come up with a prioritized action plan can help you cope with your child's diagnosis.

Chin Up – Diagnosis is Not the End Game!

Doing some research and helping come up with a prioritized action plan can help you cope with your child's diagnosis.
Doing some research and helping come up with a prioritized action plan can help you cope with your child’s diagnosis.

Hearing your child’s diagnosis for the first time is an experience that will stay with you forever. Even if you have long suspected that something isn’t right, knowing it for sure can throw you into a state of paralysis.

It’s a neurobiological response: the enormity of the news temporarily overrides your ability to act or make decisions. Your mind is swamped with frightening questions: What does this mean for my child, for our family, for me?

More families are going to have to confront diagnoses such as ADHD, autism spectrum, and learning disorders such as dyslexia. This is partly because the DSM-5 has broadened the definitions of some disorders, as I mentioned in my last post.

But parents should know that any diagnosis is only a reflection of their child’s developmental process at one point in time. With appropriate interventions, a child who displays a certain set of behaviors at age 5 can be very different at age 15. Or age 25. Children can and do grow and develop.  Keep that in mind as you are absorbing your child’s diagnosis.

3 Steps to Accepting Your Child’s Diagnosis

1. Be aware of your feelings.  Your reactions to your child’s diagnosis are hard-wired, based in the same evolutionary part of the brain that triggers fear when an animal is threatened. If you are initially feeling paralyzed or in denial, it’s a normal response.

Your emotional reactions to your child’s condition will have a big impact on the child’s well-being, so from now on try to be mindful of how you are feeling and how it is affecting your behavior in the presence of your son or daughter.

2. Ask yourself, “Does this diagnosis fit with the child I know?” If what the doctor is saying is not consistent with what you know about your child, something may be off. No one knows your child better than you do.

It’s true that most parents go through a phase of disbelief and denial about a diagnosis, but underneath the denial there is usually a feeling of, Yes, that’s him. He always struggled with language. Or, Yes, his frustration level has always seemed unusual to me . . . He has always seemed like he doesn’t really know how to make friends. . . He isn’t reading and all his friends are. . . .Yes, there is something wrong.

If the diagnosis feels accurate on a gut level, it probably is.

Occasionally, however, the doctors don’t get it right. But most often, they do get it right, but it makes you angry and your instinct is to push back and say “That’s not my kid!”  I will discuss anger as a reaction to having an atypical kid in a future post. But, for now, take a mental note of your feelings and keep alert.

Maybe you wonder if you should  get a second opinion? If you don’t trust your own instincts, seek the opinion of someone else who is frequently around your child—a spouse, grandparent, sister, aunt, neighbor, or best friend. But also please remember that professionals who are trained in diagnosis and treatment have your child’s best interests in mind and don’t give out diagnoses randomly.

3. Take action: Work with your diagnostician to prioritize an action plan. Many children are diagnosed with more than one condition. The parents will receive a list of recommendations that can be 5 or 10 items long and include things like a psychiatrist for medications, an educational therapist, speech therapist, occupational therapist, soccer coach, and family therapy. And you will get books and articles to read as well as recommendations for several ‘cutting edge’ therapies. It’s a lot to take in!

Obviously, parents cannot do all these things at once, and they end up feeling horribly overwhelmed.

So go back to the person who diagnosed your child and ask for a prioritized action plan and a timeline. What is most important? What needs to happen when? For instance, many people recommend tackling intensive remediation during the summer, but you know  that this won’t work for your child. She needs to be outside playing.

Ask the diagnostician to consider the needs of the whole child rather than just writing prescriptions. If the diagnostician cannot do so, you may want to take your results to another therapist or doctor and ask that person to prioritize your plan.

In this blog I’ll continue to give you advice on managing your child’s treatment and —just as important—keeping yourself calm, focused and cared-for during the months ahead.

So, chin up, chest out, right foot forward, you can do this!

Has your son or daughter recently been diagnosed with one of these conditions? How did you react? Tell me your story in the comments — and don’t forget to sign up for blog updates in the sidebar!

7 thoughts on “Chin Up – Diagnosis is Not the End Game!

  1. As a pediatrician, I think that Positively Atypical is a great resource for parents. This blog deals with an aspect of developmental disabilities that is often overlooked; parental acceptance and empowerment. I will definitely recommend this blog to my parents
    struggling with ways to help their children overcome their hurdles. Dr Tova Yellin NJ

  2. From LinkedIn:
    Chermaine Meissner • Our son was diagnosed with Asperger’s at almost 5 Yeats old, after being kicked out off daycare for one to many meltdowns. While we didn’t understand the cause of his behavior, it was disheartening that a daycare facility was not trained to deal with children with extra needs. Fortunately, we have a very good therapy clinic in the area with wonderful staff who was able to ease my hysteria and help me out during this difficult time, while my husband was out of town for a week on business. For me, there was relief with the diagnosis. I was able to research and read about ASD to better understand how to help our son be the best him…..which is still in practice today. We are all given challenges in life, some harder than others. We grow as individuals by working through each challenge. Our son is a blessing I count each day (even the most challenging days)!!

  3. From LinkedIn:
    If your child has been diagnosed with ADD, see Dr. Gordon Neufeld’s videocourse “Making Sense of Attention Problems.” which explains the root of the problem, how to tell the difference between an attachment based problem and a neurological problem, and what parents and other caregivers can provide to address the root of the problem.
    By Shoshana Hayman

  4. Another reader from LinkedIn:
    Karen Gilman • Let’s make sure to help parents understand that school district preschool special ed IEP teams don’t “diagnose”, they find a child “eligible” due to certain assessment tools/outcomes/observations, not necessarily rendered by a licensed psychologist or M.D. We might think it’s semantics, but the easy confusion of these two words affects parents’ understanding of the resources and route to services and therapies. I imagine Rita and Cleo’s comments are truly more in sensitive response to helping parents deal with the eligibility vocabulary linked to their child when hearing it for the first time, even when they suspected their child was delayed, whether to be deemed “developmentally delayed” or having autism. Anecdotally we see this is nearly always an emotional shock. It can be meaningful for us as advocates to share with parents beforehand the list of possible eligibilities for preschoolers…..

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