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Living With FASD

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I didn't intentionally leave it out the other day…or if I did it was subconscious. When I was blogging about my struggles with Mordecai I was focusing on his educational needs and how I could meet them, not what the root of the problem is. And to be honest, I've spent years trying to "protect" him. I don't want him to be seen as "that boy with FAS"…. But the reality is he was diagnosed at age 2 1/2 with Static Encephalopathy Alcohol Exposed. In plain English, that means: permanent brain damage due to alcohol exposure…in older language he would have been diagnosed with "Fetal Alcohol Effects" as opposed to full-blow "Fetal Alcohol Syndrome". They have since updated the terminology even more and now put it all under the umbrella term: Fetal Alcohol Spectrum Disorder. He was evaluated down in Seattle by the experts in the field. These doctors know more about FAS than anyone in the world. 

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Unfortunately, being an expert in FAS or FASD doesn't mean they know how to teach him. It's a bizarre world inside Mordecai's brain, I'm sure. Somedays are good. He has self-control. He remembers things. Schoolwork comes together…more often than not though, he's struggling to retrieve the right word, he can't remember how letter sounds go together to form words, and his anger and rage get the best of him….he's always half a pace behind…

Behind Jubilee, who is two months younger. Behind Hezekiah, who is a year and a half younger…and on many days, behind Tucker, who's three years younger. It didn't used to bother Mordecai, but as he gets older I'm pretty sure he notices these differences more and more. He can't read his Cub Scout book and rarely has the mental endurance or patience to finish the requirements for a badge…

Day after day, Mordecai struggles to keep up through a fog…I appreciate all the resources you blog readers gave to me when I blogged about Mordecai last week…one quote I read from one of those blogs was something like: a baby with FASD will grow up to be a kid with FASD who will grow up to be an adult with FASD. And that statement, no matter how true it is, makes me sad. I want him to outgrow it. I want him to have a healthy brain and a fair shot at life. 

But life of course, isn't fair. 

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No one really knows how to help these kids…if I knew of a program that worked specifically with kids with alcohol damage, I'd have him there in a minute…

Instead we wait.

Wait for someone to come up with a great, new program that works.

Wait for him to finally "catch on" to reading. 

Wait for him to remember the difference between "breakfast" and "lunch".

Wait for him to learn the difference between "13" and "31".

Wait. Wait. Wait.

And hope that someday, by some miracle, he is a successful, happy adult.

 

16 Comments

  1. Shawn

    Oh gosh, that must be very saddening!
    I don’t propose to know a single thing about FASD, but if it is of any interest to you, I feel like some of the dyslexia info. I’ve been reading about/materials we are utilizing are for similar struggles. I only mention this because of the language ‘disorder’ it seems like Mordecai struggles with. If you have any interest, let me know. (Yes, I know!! Totally different issues we’re dealing with, but maybe there’s a connection in there somewhere.) I hope your day is well.

  2. Heather B

    This makes me so sad and angry. The first person who could have done everything in their power to give him the best life possible let him down for alcohol. I come from a long line of alcoholics and could never understand how it could be their number one priority in life and everyone around them has to pay the price. Luckily he found his way to parents that are able to highlight the good. In your posts he is a beautiful, vibrant boy with all the potential in the world! If I hear of a program specifically designed to help FASD I will pass the info along.

  3. Liz

    “And hope that someday, by some miracle, he is a successful, happy adult.”
    He has hugely more chance of this outcome than he might have done. The family he is being raised in *will* compensate so much for his difficulties – I firmly believe that God has placed Mordecai with you because it is the right place for him, the best place for him. Whatever happens in his future, he is always going to have this big family, this big support network around him, and that will go a long way towards helping him to function independently.

  4. Marianne D

    Our little princess adopted from Russia, now 11 years old is most likely FAE…She doesn’t know the difference between breakfast or lunch….concept of time- forget it. It took a full year for her to learn her ABC’s ( Thank God for Leaf Frog)…She is 3 years behind her peers…..She learned to read using Explode the Code …I just wish it went up to 12th grade. Math- forget it…every year we do another math curriculum and every year I have to bring her back to 1st grade sometimes kindergarten. Because of your blog we are trying Mathematical Reasoning Grade 1..she likes it and “seems” to be getting it (Thank you)….why the long story..to show you there is hope…we were at our whits end this year…someone introduced us to LearningRX ( I don’t even know if they have them on the West Coast)…it’s not tutoring..it’s training the brain….so far we are seeing some improvement ( after 6 wks)…her reading is more fluent.. simple math she is no longer is using her fingers ( I mean simple..1+2)..but more importantly she is saying that school was easy today something I thought I would never hear….is this a miracle, NO….is it hard work, YES…is it expensive…unfortunately , Yes…….just thought I would pass this along…you have helped me with some curriculum …..

  5. Stacy

    ((hugs)) I work in early intervention and for the past 4 years I have worked with a sibling group of kiddos that we are pretty sure have FASD and prenatal drug exposure (and subsequent neglect). There are 5 kids in the family and at least 4 of them have FASD. Thank God they’re all in good foster homes now with the potential for adoption. Unfortunately, I don’t know of any programs specifically for those kiddos- do you think martial arts could help him with some of his focus issues? I know it helps a lot of kids and they will start where he is. How about a program specifically designed to help with anger management?

  6. Liese4

    In our HS group we have quite a few kids with FASD and a lot with all kinds of special needs. I have noticed that they are all progressing, sure some are slower than others, but they are making gains. Sometimes it is so frustrating to teach the same thing to a kid over and over and …why aren’t they getting it! Argh! But, those that persevere are rewarded, I have seen it. Whether you go the public school route or keep HS’ing him, he will get it. My friend blogs here (http://woodstone.homeschooljournal.net/) about her exceptional kids. She doesn’t always write about the struggles, but it’s there.

  7. Callie

    This is beautifully–truthful–written.
    I can relate on a smaller scale. It is painful to live through, and yet there is a hope that things will/can change.
    Thinking of all of you!

  8. Yvonne

    I’ve been reading your blog for a while but never commented before. I also read a blog by a woman with 2 children with FASD. The quote in your post is very similar to one she wrote last week so you may already read her blog but if you don’t, you should take a look.
    http://coffeecatharsis.blogspot.com/
    I am a university student studying toxicology and a few months ago we briefly touched on FASD. Everything we talked about in class I could relate back to something I read on Kari’s blog.
    I hope you are able figure out what is best for your family and Mordecai. No one seems to have a clear answer on how to help kids who are struggling. You can only do what you think is best. I’m sure you will.

  9. Kristi Perry

    Oh I just have to tell you this! Just last week I took care of an adult with FASD. He made such an impression on me–making my eyes well up with tears. I was just amazed at his courage and joy. He was proud of himself for the progress he was making with positive choices in his life. He was secure in who he was (I know it was a journey for him.) He was so kind, so happy to just have me sit and talk with him. He touched a place in my heart that I didn’t know existed. Just wanted to share that. Praying for sweet Mordacai!

  10. karla

    Our now 12 year old daughter lives with the effects of a very difficult pregnancy and a premature birth. We have seen it coming and it has happened that her 7 year old brother has passed her academically and will pass her socially very soon. It is a difficult thing to watch and even more so, with your son knowing it is happening. I hope that you can find Mordecai the help he needs soon. And I agree that with his family, he can achieve far more than any of us can imagine!

  11. Jo

    As always will pray for you and your family. this is a tough battle, I do not know how it feels as a parent but I have to agree with everyone else, though you may not see as many triumphs as you wish for him, he is more triumphant in your loving family than he would be in many other places. He is successful just by belonging to you all. I had a question, though it may not be one you can answer, will Avi have/or does have some of these same problems? I know that she and M were not born to the same birth parents, but was she born to a similar pregnancy?

  12. sunny

    One of the things they believe about FASD is the poor choices that are made by the parents who drank also carry through in their parenting. There is reason to believe that in stable homes, with parents who are diligent like you, part of the pictures is much improved by that environment alone. My child is from Russia and its something I learned during homestudy.
    I know of the FAS doctor clinic you speak of. Want to hear something interesting? I took my daughter to that clinic when I still lived in the area. I learned during my adoption that one of the doctors who put the name/symptoms to FAS was my pediatrician growing up. They happened to notice some similarities in a few babies in the hosp…and common denominator was prenatal exposure. they started paying attention…and there it was.
    Its fascinating, there is info on the web, although I’m sure you know this. I was just amazed it was my pediatrician who was doing this research on the side. I hadn’t thought of her in years.

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