Living with Fetal Alcohol Spectrum Disorder

posted in: Special Needs | 42

Living with Fetal Alcohol Spectrum Disorder

Fetal Alcohol Spectrum Disorder can manifest itself in a variety of ways, person to person. At its core, it is permanent brain damage caused by prenatal alcohol exposure. Here is a just a small taste of what we deal with on a daily basis. 

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Imagine:

Telling your child he can’t have a granola bar. This sets off a four-hour rage that ends only when he throws a rock hard enough at the van to shatter the back windshield. Child doesn’t understand why you’re upset. It’s not his fault. He didn’t mean to break the window…just throw rocks at it. Child never “owns up” to breaking the window because he truly sees it as an accident. He cannot see that he caused the broken window.

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Imagine:

Telling your child to clear the table, his one and only household chore. He might do it. Or he might knock down chairs, throw any small item within reach and go to his room and scream for an hour.

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Imagine:

Early in 2015 my son with FASD had an appointment at the Children’s Hospital. They asked his birthday. After thinking for a moment, he finally came up with “September 3rd”. When asked the year he couldn’t answer. I told him he was born in 2002. Now, over six months later, if asked when his birthday is, he answers “2002”. Because that was the “right” answer once, he is convinced that is the answer. Why has this one answer stuck when it takes him so long to lean other things? Who knows. I’m sure eventually it will fade, but right now, it is stuck in his brain.

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Imagine:

A 13-year-old who still mixes up the words: bagel and donut, ketchup and syrup, watermelon and pineapple. See the pattern? Similar items…but the wrong word. These are just a few examples.

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Imagine:

You see your child about to brush his teeth with the tube of yeast infection cream you are using on his little brother. You take it away and your child gets angry and yells, “Then what am I going to use to brush my teeth?” He remains mad at you for the rest of the evening for taking away his “toothpaste”. He cannot see that you were protecting him from using yeast infection cream. He only sees that you asked him to do something (brush his teeth) then got in his way when tried to do it.

Imagine:

Your son looks perfectly “normal”. One good days giggles and laughs. He does his homework, he joins the family for dinner. He goes to school. His teachers expect him to do his work, to participate in class. And on a good day, he does. 

Imagine:

A 13-year-old son still loves to cuddle. Who is very affectionate and well-attached. Who can out-LEGO and out-puzzle my kids with no special needs. Who is an artist. Who is great with animals and babies and toddlers. Who is creative.

Imagine:

More “bad” days than good ones

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I don’t share these stories to demean my son. He is fiercely loved and we offer him all the support we can. I spend many hours every week advocating for him in the form of phone calls and mountains of paperwork. I share these so you can get a glimpse of the realities many parents of alcohol effected kids are living with.

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The world doesn’t understand Fetal Alcohol Spectrum Disorder. The behaviors my son exhibits are not rebellion. They aren’t something more love, or more discipline, or more rules, or fewer rules are going to solve. His brain was permanently affected by the alcohol his birth mother consumed during her pregnancy. Nothing can change that. He can know something one day and forget it the next. It is called being on the fetal alcohol spectrum.

My son is handsome and strong.

My son is the face of Fetal Alcohol Spectrum Disorder.

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Amazon affiliate links to my favorite books about the reality of FASD:

The Broken Cord– Michael Dorris’ classic book about his son with full-blown Fetal Alcohol Syndrome.

Damaged Angels– Bonnie Buxton articulately describes life with her daughter affected by FASD, and the impact it is having on the next generation, her daughter’s children.

Fetal Alcohol Syndrome: A Guide for Families and Communities– Ann Streissguth’s classic book; full of case studies and research.

 

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42 Responses

  1. Thank you so much for sharing we are just beginning our journey with our foster hopefully one day adopted daughter. She in only an infant but her mother drank heavily while pregnant so we are trying to be prepared the effects of drain damage as she grows.
    Thank you for showing a glimps of the hard and ugly as well as all the love and goodness that comes from having these kids in our lives

  2. Great glimpse into some of what FASD looks like and living with it….. it’s very encouraging to know that we are not the only family that is dealing with these issues. Imagine….your son times 4…. oi…. Love you, friend!!!

  3. My hat is off to you! And you have a book too–just about this. You mention he’s artistic–encourage that to THE MAX. So many artists have Attention-Deficit, Anxiety, Schizophrenia–the range of instabilities, but what stabilizes them is art. Oscar Wilde said, he went to art “Because art does not hurt us.” And Shakespeare: The lunatic, the lover and the poet “are of imagination all compact,” i.e. all think the same way. Better a poet than a lunatic or a lover, especially if he’s thirteen. Get that kid into every kind of art you can find–try ballet, too, or any dance form demanding disciplined movement.

  4. this makes me very sad for your son. i am sure he tries his best. God bless him and I will be praying for God to help him as he grows. praying for you and Chuck as his parents and his brothers and sisters.

  5. Thank you for your openness and vulnerability in sharing this aspect of your family. I had no idea how similar FASD is to Autism…don’t mean to generalize I’m sure there are many differences. But I related to so many of the scenarios you described, having dealt with many similar issues with my son who has Autism. After 3 relentlessly hard years we are finally seeing real solid progress. Hang in there sweet Mama! I know your days are gruelingly long and unbearably hard. Here’s to embracing the good moments however brief they are here. And on the hard days, praise Jesus for his mercy and grace…AND COFFEE & CHOCOLATE!!!

    • bakersdozenandapolloxiv

      Interestingly, my son is on the waiting list to be evaluated for the Autism Spectrum. Hoping an opening comes SOON!

  6. I didn’t realize your son and my daughter share a birthday. They also share FASD. Her correct answer would be 2001. She still calls syrup, “gravy.” She is struggling with 4th grade reading, and holding her own with 5th grade math. She can also be incredible with animals and younger children- or so cruel she can’t be left alone with them for even a second. I just never know which day is which. She is artistic, musical, and funny. She also steals, lies, and hurts small children. And her FASD is considered mild- her birth mother quit drinking fairly early in the pregnancy. You’re right- the world doesn’t understand FASD. Just 3 glasses of wine two times in your early pregnancy is proven to cause permanent brain damage. There are new studies out showing that just ONE glass of wine makes the baby’s heart rate undetectable for 2 hours. If you are pregnant- PLEASE don’t drink. At all. Ever. If you are choosing to drink, please try your best not to get pregnant. These children are dearly loved, but they will struggle their whole lives. The are are so many special needs that cannot be prevented no matter how well a mother cares for herself during pregnancy. But this one can be prevented. We need to start preventing it.

  7. I was just going to say what a previous commenter said about the similarities between autism and FASD. I have my nephew on the fetal alcohol spectrum and 3 children on the autism spectrum in my daycare right now. I honestly never noticed the similarities between the two despite having experience with both.

  8. My son was exposed to drugs in utero. Very powerful drugs. None of them were I worried about. I was more concerned about any exposure to alcohol. Alcohol is much more damaging in utero than many illegal drugs. People just don’t realize that.

    • Very true. Alcohol is so damaging to a developing child,much more so than many street drugs.

      • yes this! A bit off topic , but I am a nurse and DH a Dr and at times it gets brought up about pain meds and pregnancy. Anti anxiety meds and alcohol are way worse as far as causing long term effects. Alcohol scares me when we adopt. I mean I only know what the birth moms are truthful about and I often wonder now about things that have been diagnosed….no one has gone any further than to ask “was he exposed to alcohol in utero”. after a quick answer of “not that we are aware of” it has never been brought up again…..hmmmmm

  9. Thanks for this post, it describes my son 100%. Do you use any medications to help him? If so do you mind sharing what kind and why? We are still seeking an actual FASD diagnosis for our son as he does not have any facial abnormalities, doctors in our area refuse to diagnose him. We have proof that birthmom drank but that obviously isn’t enough

    • Did you take him to a genetic doctor? My son was diagnosed by Yale genetics. They have to rule out any genetic reason first.

    • bakersdozenandapolloxiv

      If you click on this link you will see the rating. My son’s official diagnosis is static encephalopathy alcohol exposed. As you can, he doesn’t have the growth deficiency or facial characteristics, but is known to have severe CNS abnormalities (structural, neurological, and/or severe functional abnormalities). My son was diagnosed by the world’s leading experts on FAS here in Seattle.

      He takes guanfacine for his anger…I’m not sure it works, but gives us a shred of hope and helps us feel like we are doing something.

      http://depts.washington.edu/fasdpn/htmls/fasd-fas.htm

      • My son takes guanfacine too. While it never has seemed to make a remarkable difference, it does seem to take the ‘edge’ off. And when we are talking about the kinds of rages you’ve describe, ANY amount of relief – however small it may be- is gladly welcomed. And I will say that when my son’s anger was at it’s worst we switched doctor’s and our new dr. was less conservative with his dosing and doubled my son’s dose (1 mg 2x’s per day) and we did notice a much more significant difference.

  10. Thank you, thank you for sharing. I know this child is so very loved and supported, the honesty helps other families know that someone understands them.

  11. I would like to know if the symptoms are the same for adults that may have FASD.

    • bakersdozenandapolloxiv

      I would imagine they are. People do NOT outgrow FASD. They may learn better coping skills, but the damage done the brain and central nervous system cannot be undone.

  12. I taught a grade school special ed class with several children who were FAS but also addicted at birth to heroin. Moms couldn’t make up their minds which they wanted to poison their body with more. They were medicated to the point of listlessness and could not make any progress and the standardized tests the state insisted on looked like check matches on their answer cards.

    Several years later I taught high shool students who were in the SDC (Special Day Class). They were also products of their prenatal environment and no one knows what their future held for them.

    I wish the mothers of these children could see what they did to their children. Just to see the sadness and terrors that they experience.

    You are so proactive and I hope that you can get the best treatment for your child.

    • Paidi Violi To Alithino

      please, consider the place these mothers are into. At very least they loved their children enough to choose to have them and to give them to someone who will properly care for them. They may also have improved themselves -or at least try to. We will never know the real circumstances.

      • bakersdozenandapolloxiv

        Paidi, I have nothing but compassion for my children’s birth moms. I know both came from very difficult situations. Who knows what I would have done in their shoes…

  13. Margaret Lawson

    I really don’t think woman are made fully aware of the affects of drinking during pregnancy. I often think they should be shown children who have FASD so they can see the damage they do by drinking.

    • also many “don’t know” they are pregnant. We have a child who’s birthmom claims she didn’t know until she was 6 months pregnant. Another had a baby already ( few months old)and not sure she knew she was pregnant for awhile as she was very young and already had a baby. Another never got any pre natal care….so I don’t know that “showing” these women who are coming from these situations where support is slim and they obviously chose(or its chosen for them) that they cannot take care of a baby/child would help any..this is obviously a problem that probably occurred way before they became pregnant.

  14. Kath Thomas

    Our beautiful little foster son is only 6 but so much rings true, so many struggles but so many joys. (I too met my husband of 16 years on Teen Missions!)

  15. Very well written! I have an 11 year old daughter ( adopted) She is absolutely amazing,but at the same time such a challenge,I can relate to most of the above!! Especially the bit about the ‘toothpaste’ we have similar incidents to this daily!!! Thank you for sharing!!!

  16. Very powerful and thought provoking. Thank you.

  17. Yep. I get that. My son was born meth effected. The hard part is no one “gets ” him because he looks normal. I know it sonds awful, but sometimes I want to scream at people that I am not a bad mom! 🙂

  18. Oh, thank you so much for sharing! I know these are not easy words to write! We have parented many children (through foster care) with very similar experiences. We are currently parenting children, though different, who exhibit similar behaviors. It’s so very difficult, yet their good days are so precious and sweet. It’s hard to describe sometimes yet you put it into words so well by sharing the specific details in a way I often struggle to do. Thank you.

  19. […] such as My Farewell to Homeschooling and Living with Fetal Alcohol Syndrome and The Day I Decided to Wear Only Dresses have really struck a chord with readers. I hope to […]

  20. I am enjoying your blog!! I have 11 adopted children. I wanted to let you know that we have found that healing our children’s gut on the GAPS diet has significantly helped problems that I thought were FASD. We still have FASD, but many physical and behavioral problems disappeared with good food and improved gut health. We also found huge success with B12 and Folate supplementation. I just wanted you to know.

    God Bless,
    Teresa

    • bakersdozenandapolloxiv

      Thanks for letting me know. I can’t wait to check out your blog. Mordecai has gotten more and more picky over the last two years…I can’t imagine trying to feed him a restricted diet, but I will look into it.

      • I second the Gaps diet. Just take it slow, one item at a time. I have seen huge results, but at first it would be a great change, then regress, then back to change even more. We did that dance for about 2 years. In the end the changes stayed perminate. 🙂

  21. My adopted soon has FAS also….it’s tough to know how to parent so you are helping them reach their full potential…
    He’s ajoy♡♡♡

  22. First glimpse of this website, and wow! So many stories mirror ours. Son, now 26, adopted at birth. FINALLY at age 20 had the dx of FASD/ARND along with other documented dx and learning challenges. Creating our own semi-independent living program, with support from a life coach. Like your son my brown-eyed sweet son does not have the face but struggled with growth issues and has the rest of the typical FASD difficulties. Wish we could find a job setting that would work, allowing a little more opportunity for self-esteem, but for now this momma insists he volunteers in his community on a regular basis. My son has a sweetheart (learning challenges too) and is looking toward a steady ( and supervised/supported) life and future! I am blessed that his 13 yearold birthmom chose me! Not an easy path for any of us, but definitely the right one.

    • bakersdozenandapolloxiv

      Thank you for sharing a bit of your story! My is sweet and affectionate…when he isn’t raging. When he is raging all bets are off. I have no idea what his future holds or if he will ever live independently. I just home when the time comes the resources are available to help him.

  23. Thank you for this..it is nice to know we aren’t alone. I can read your blog and the comments and see a little of our son in each of them. Our 11 year old has FAS among other diagnosis as well. He has some of the physical features but also just looks like a normal kiddo and some days can pull off the behavior to match as well. But some days simply asking him to brush his hair before school can send him into such a rage and meltdown that last so many hours there isn’t any use in even taking him to school..which was the case yesterday. This morning he brushed his was happy to hair on his own and off to school he went. Every day is different and not usually a lot of heads up about which way it’s going to go. We are just 20 months into our journey with our son so we are learning as we go…

  24. What about FAE…..where does that stand now days …and is it worse than FAS and they other one?

    • bakersdozenandapolloxiv

      Lou, they have simply updated the terminology. They used to have just Fetal Alcohol Syndrome and Fetal Alcohol Effects. Years of research has shown it there are many variations, so they they now just he umbrella term: Fetal Alcohol Spectrum Disorder to cover them all. They no longer use the term FAE.

      While the dated term FAE is more “mild” than full-blown FAS, long-term studies show people with full-blown FAS actually do better…because they look affected so people’s expectations for them are lower.

  25. […] or read, “I drank during my pregnancy and my baby was perfectly healthy”. Perhaps, but my son is not okay. He struggles to learn, he struggles to keep up with his peers, he struggles with social skills and […]

  26. […] yesterday I was struck by the fact that everything, every routine, every external motivator make the life of my son with Fetal Alcohol Spectrum Disorder (FASD) more […]

  27. […] of most difficult typical issues (not heart defects, FASD or hearing loss) we have dealt with in our parenting has been disrespect in the early teen and […]

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