How We Let Go Of “Normal” When Our Children Were Diagnosed With FASD.

You never anticipate the emotions you will feel when you receive an official diagnoses for your child. You realize that a lot is going to change. But there is a way to let go of normal and accept your new reality.

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No one ever starts out on their parenting journey thinking that their child will have special needs. Especially one that will make school and social interaction difficult. And yet, it happens. And we grieve. We adjust our life’s vision, and then we learn to accept our new normal. We eventually stop holding on to the ideals we had, and rather fall in love with the reality of our precious baby girl or boy. Our beautiful child who has special needs.

This was our experience several years ago when we first discovered our oldest son had Alcohol-Related Neurodevelopmental Disorder (under the umbrella of FASDs). This disorder was a direct result of his birth mother consuming drugs and alcohol during her pregnancy with him.

We grieved. A lot.

We went through the myriad of emotions you feel after the doctor sits you down and presents an official diagnosis. We felt anger, frustration, sadness, worry, resentment, and fear. Questions upon questions raced through our heads: What does this mean for our child? Will he be able to make it through school? Will he be labeled everywhere he goes? Will other kids make fun of him? Will he ever find a genuine friend who doesn’t look down on him or judge him for his disorder? Will the rest of our family see the same beautiful, precious little boy that we see?

And then there’s the fury we felt towards his birth mother. For years we carried it with us. More like resentment mixed with rage, mixed with frustration, mixed with a whole lot of accusatory, “How could you?” One big cocktail of emotions (no pun intended). But we worked through it, and we accepted our new normal.

We familiarized ourselves with IEP (Individual Education Plans) meetings and non-mainstream class scenarios. We sharpened our FASD verbiage for long conversations with coaches, teachers, Sunday School teachers, and neighbors who hosted play dates. We knew more about our son’s disorder than most doctors. We even made it through one of our younger sons’ diagnosis of the same disorder. We didn’t have nearly the tough time accepting his diagnosis as we did our oldest son’s, simply because we’d been down this road before.

And then, life went on.

We set rigid boundaries in our family, ones that other families do not necessarily need. Bedtimes were by 8 PM every day, even on the weekend. Even in the summer. There were special diets to adhere to that would aid in focus and minimize triggered behaviors. Play dates were limited with those families who were less understanding if things went south very quickly. This was our structure, our routine, our MO. Our “new” normal became so normal, that we eventually forgot what actual normal felt like. And that was okay. We loved our children no matter what, and believed in their future — regardless of what anything on paper claimed. And we learned a good balance with our other children, who didn’t have this disorder.

Or so we thought.

To be frank, the conversation felt like a punch in the gut. My youngest child’s teacher looked at us and asked the question that’s still ringing in my ear — “Have you considered having him diagnosed?”

We hadn’t heard a question like that in years. Our hearts sank to the lowest possible point in our chests. We cried, we ached, we prayed it wasn’t true. We had seen some signs, and might have wondered now and then over the years, but not enough to prompt us to seek an official diagnosis. If I’m being honest, we were in denial.

While I had accepted my other two children’s disorder, it was still extremely difficult to deal with mentally and emotionally, and socially. ARND prompts lots of aggression, impulsion, and socially awkward behaviors. Not to mention, there are some serious judgmental stigmas out there that are hurtful and unfair. Would we be prepared to go through this all again?

But, there we were, once again seeking a diagnosis. I knew it would be good in terms of creating an IEP for my child’s education. What I feared was the nasty comments and harsh looks, both at our family and my dear son. The doctor revealed that another one of my children had this awful disorder. Truly, it felt like I was standing graveside by a loved-one’s casket, suddenly realizing that they’re gone. The emotions hit me like a ton of bricks.

But then, I felt something more powerful than the “loss” of normal. I felt resolve. This disorder did not mean the end of my child’s story. Not even close.

As with my other two children, we would just turn to a different chapter. You see, the graveside I was standing next to in my mind, was not the burial site of my son’s future. It did not symbolize the end of the hope I still had for him. It was the death of the expectation I had built in my mind. It was the “so-called” return to normal I had anticipated after years of caring for special needs. And the loss of a life expectation, my friends, is a memorial that we all stand beside at one time or another.

Life doesn’t turn out the way we think it will, and that’s not necessarily a bad thing. It leaves us open to accept new possibilities. The truth of the matter is that the latest diagnosis we are facing does not mean game-over. Not in the least. It means a bigger and better story is unfolding.

Today, I am a man who has gone through grief. I have grieved the normalcies we had thought we were going to have as a family, but don’t. And, now, I’m at peace with that. I don’t resent our life, or my precious children, at all. In fact, I love them more than ever. When I peer into our future, I see a lot of brightness around our family, and that’s what I choose to embrace.

Question: Have you grieved your child’s diagnosis lately? Share your story with us in the comment section below. You can leave a comment by clicking here.

This post was originally published on in my column on Disney’s Babble.

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  • “You see, the graveside I was standing next to in my mind, was not the burial site of my son’s future. It did not symbolize the end of the hope I still had for him. It was the death of the expectation I had built in my mind. It was the “so-called” return to normal I had anticipated after years of caring for special needs. And the loss of a life expectation, my friends, is a memorial that we all stand beside at one time or another.”

    I relate to this so much. My youngest son has special needs in the form of Down syndrome, and I know my brain struggles with the ongoing need for flexibility and adjustment that this life asks of me.

    • We know the struggle all too well. Hang in there. 😉

  • Tina Brausch

    How did you get an official diagnosis?
    My girls bio mother says she didn’t drink or do drugs however the oldest was removed due to driving under the influence with children in the car and the youngest two were removed due to drugs. We had genetic testing done on the middle one but her tests were normal however she didn’t meet the physical indications of FASD but they said they are back to it’s ‘probably’ fetal alcohol effects. So still no REAL diagnosis other than ADHD and anxiety:( Is there a brain scan that is done that shows the abnormalities?

    • Hey Tina, we went to an official FASD clinic here in Indianapolis where we live and obtained a diagnosis that way. As a part of Oasis Community (our new support site releasing this coming Monday, April 10th) we include state-by-state resource guides that list clinicians who can diagnose.

  • Hayley Sumner

    So very true for us this week. After multiple appointments, years of various professionals, we now come to a diagnosis of fasd (he is also sight impaired). I am very confused, worried and saddened about my sons difficulties and seem to have lost that much needed fight. I know it will return like a trusted friend, because my sons deserves a warrior.

    Thank you for your posts. They really help me feel I am not alone.

    • So glad to hear this Hayley. You are not alone. We are in this trench with you. Hang in there.

  • Murray Coulter

    This post rings so true for us. We were going through getting a diagnosis for our younger son at this time last year. He is now seven. We knew he was delayed since he was about 18 months old. When we sat down in the case conference for the diagnosis, we were informed he had an intellectual disability as well as FASD. At his point, it seems the FASD is his minor issue. Our opinion may change as he gets older. He has rages, temper tantrums, throws things, and rips stuff up. Transitions can be a huge challenge.

    I would encourage anyone walking through this path to read Kristin’s book, Born Broken. I don’t read much for enjoyment, and read it in two evenings.

    We received a diagnosis for our older son about two years ago. It was a surprise for him, but it was a huge relief to get an explanation for some of the odd behaviours.

    Once you get a diagnosis, it can still be very challenging to access supports. There are so many agencies, and each has its own mandate.

    The most important thing is to access supports and respite. My wife and I had our first weekend without the kids in years, and it was glorious.

    • Absolutely! This is great advice and perspective Murray!

  • Emily Mulder

    When a child “looks normal” it is difficult to explain why the child has behavioral issues! We have a similar problem to Tina, with maybe FASE. We were told, it is possible, he has some appearances, he has some serious learning difficulties, but since the mom didn’t admit to anything, they can’t give a diagnosis for it. And like you said, we want so badly for our kids to be “normal”. I think the other struggle is wondering if we missed something or did something wrong in our parenting to prevent normal from coming out. And the latter is something we will probably always struggle with, and always wonder if there is something else we can do, if we’ve done enough. I like what you said: “Life doesn’t turn out the way we think it will, and that’s not necessarily a bad thing. It leaves us open to accept new possibilities….It means a bigger and better story is unfolding.”

    • Totally understand this Emily. We have been in that place of wondering too…even over the past few years with our youngest son. But then to receive the official diagnosis is difficult to digest because then it becomes real. Thanks for sharing here openly and honestly.

  • Brandi T.

    Beautifully written Mike, and right when I needed to read it too. Do you have any suggestions or point me towards any resources on working through the grief? I feel so stuck with it and I feel like I can’t do my best for my son if I can’t work through the grieving process.

    • Oh I am so glad to hear this Brandi. My good friend Jason Jones just penned an extraordinary book called Limping But Blessed. It’s out now. He tells their story of losing their son at 3-years old but gives some great principles for helping through grief. Visit for info.

  • Jennifer Redmond DeBeltz

    Life with a diagnosed Severe FAS child is sometimes just downright exhausting and terrifying. Our son was diagnosed when he was 2 years old and now 10. Life has been chaotic for 12 years, it is our “normal” . He rages, throws tantrums, destroys things, hoards things and this is daily. Fighting the schools to have them understand his diagnoses instead of calling it “Other health impaired” has been a 5 year battle. Finally getting somewhere with having him the proper supports and aides. My heart has been broke since my 2 year search for a diagnoses began and it still breaks everyday. I don’t know how to let go of the pain I have for his life, the way it is.

    • I hear your pain, Jennifer. So sorry it’s been so hard. You are not alone. I can see that you have fought hard to get him all the help he needs. Praying you receive some refreshment to keep you going.