What good was his diagnosis anyway?

What good was his diagnosis anyway?

I finally realized my adult son was not going to be able to live independently when he couldn’t hold down a job and had several arrests for theft. It was not fun going to court or visiting him in jail. I was seriously afraid he’d end up in prison.

I regret waiting to get a diagnosis until he was 23 and by that point I was desperate. What was I thinking? (“It is expensive; we know he has issues, but why get a diagnosis?”) Now I understand the importance of a diagnosis and want to share our story—how it helped my son, and me,  to become Fetal Alcohol Spectrum Disorders (FASD) aware.

Early diagnosis is very important. Ensuring access to quality and affordable diagnostic services can support families in receiving additional services and support. Getting a diagnosis of a FASD for yourself, your child or loved one can result in additional support to thrive into adulthood, like developmental disability services or educational services. Here are my six reasons to get the diagnosis:

 (Dana Cadey / For the Camera) Emmaus Holder, left, is pictured with fellow FASD advocate Marilyn Fausset and blog author, featured in Colorado Daily article Cross-country bicyclist raises awareness and connects with local advocate for fetal alcohol spectrum disorder.

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An evaluation from an FASD-aware neuropsychologist and the resulting report, with a fetal alcohol syndrome (FAS) diagnosis, helped me explain my son’s behaviors—like can’t vs. won’t. I look back and see so many times when I thought “he wouldn’t.” Now I realize “he couldn’t.” I realize that although he had many diagnoses over the years, FAS trumps them all. It’s brain damage. I now understand his behaviors in an informed light. I can focus on interventions recommended by FASD experts and parents.

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In Colorado, an FASD-related diagnosis, coupled with a low adaptive score, qualified my adult son for developmental disability (DD) services. No need for a low IQ. I often think this was life-saving (not to mention money-saving). My son receives SSI, Medicaid, and he has a comprehensive DD waiver and lives in a host home, with all his support services Medicaid-funded. 

PROTIP – For children, an early diagnosis combined with DD services can help you avoid a long wait list for adult services.

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My son is an adult. He doesn’t want to live with me (and vice versa). Can I be mom the same way to an adult as to a child? No. Services based on his diagnosis gave us this option—he lives outside our home—and somebody else handles his medical visits and meds. And he knows (to an extent) why life has been so challenging for him—the fetal alcohol exposure. He is not at fault.

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 If I’d known about his FAS sooner, I believe his education (especially his special education supports and accommodations) could have been more geared toward his true needs/his real disability. 

PROTIP – Colorado recognizes an FASD diagnosis as “Other” to qualify for special education services.

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If my son gets in trouble with the law again, I know I can ask them to consider his disability. We already experienced a lowered sentence and charge after I could attest that he had just qualified for DD services. 

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I have recently applied for social security benefits (I’m at that age!). My son will qualify for additional social security payments based on my social security, as an adult disabled child.  Now, and when I pass, he will receive money to help with living expenses. 

PROTIP – Diagnosis before age 23 would have helped on this one!

I think back to when we signed our son up for culinary arts classes at Colorado Mesa Community College. He was living in the dorm, with support in place. If I’d had the diagnosis before that, I would have saved a lot of money—and avoided a failure. The neuropsychologist’s report pointed out that he couldn’t (not wouldn’t) handle such a setting–not with his poor executive functioning. Unknowingly, I set him up to fail. 

I look at the importance of a diagnosis. We want our kids to succeed as best they can. For them to do so, we need to see them as they are–to know the truth, informed by an FASD-aware diagnosis. The truth of FASD is that support can be tailored to the individual–to how their brain and body works. My son deserves that, and I owe that to him and now hope to help other families both follow and avoid walking in my footsteps. 

PROTIP – It can often be difficult for families to find a provider in Colorado equipped to make an FASD diagnosis. So, members of the Substance Exposed Newborns FASD Workgroup and families impacted by FASD, including myself, worked together to create a list of providers equipped to diagnose under the FASD umbrella. Illuminate Colorado, home to the Colorado Chapter of the National Organization on Fetal Alcohol Syndrome (NOFAS), is committed to ensure this list remains a resource for families into the future. 

About the Author

Marilyn Fausset is a mother committed to sharing the experiences of her family impacted by FASD through the story-telling Becoming FASD Aware blog series.

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