Fetal Alcohol Spectrum Disorder (FASD) – Part 2

 

Fetal Alcohol Spectrum Disorder - Part 2

A couple of months ago I shared that my boys have FASD (Fetal Alcohol Syndrome Disorder) and I explained what FASD is. Since I talk about the boys and some of our daily struggles on the blog I thought it was time to share what family life can be like when one or more of the children have FASD. Because this weekend happened. And it’s still fresh in my mind.

 

fASD

 

On Friday, we skipped pre-school to head into town for the boys annual medical.  The boys made the move to a daycare center from home daycare in August and they love it. Although Liam was age ready for Junior Kindergarten, he was in no way real life ready. So pre-school it was.

I was excited about this trip since the boys had been doing so well lately. Aiden was less afraid of new people and situations and a lot more social, and Liam was presenting as a lot less impulsive and seemed to be processing things a little better. I wasn’t wrong to be excited because the medicals went great. Both little guys have gained 2 pounds since they were last seen in February. Kids with FASD often have trouble gaining weight and my two are no exception. Liam has been off and on the “failure to thrive” chart since birth because of his low birth weight (smoking and drinking during pregnancy will do that) and he doesn’t gain weight easily. Aiden has sat at the 50th percentile his entire life after also being born small for gestational age. Which brings me to the physical defects possible with FASD.

 

Physical issues with FASD

 

FYI- Some children can have FASD (or one of the variations) with absolutely no physical features or disabilities. In many cases, physicians and service providers are not aware of this and children do not get properly diagnosed because “they don’t have the features”. Most of the children I’ve worked with in the past twenty years with suspected or confirmed diagnosis of FASD did not have any of the the facial features common to FASD. Aiden has a few facial features consistent with the diagnosis. Liam has a minor deformity to one ear which is not really noticeable and a thin upper lip. That’s it. Kind of hard to spot, right?

On with the story….

The medical appointments are in the same building that I used to work in so I stopped downstairs to visit with friends in my old unit. Mistake number one. Because the visit went pretty well until it didn’t. It ended with Liam punching me in the groin and running off because a wheel fell off of his new car. I took that opportunity to leave. Mistake number two was I didn’t catch one of my friends giving the boys candy, until it was too late to do anything about it. Liam can’t handle sugar of any kind. In retrospect we should have gone home at that point. Mistake number three. But, I wanted to take the boys to see my oldest daughter at the mall and have lunch. I really know better. Experience and other parents of children who have FASD will tell you that doing more than one thing per day is a recipe for disaster. I didn’t forget….I was just overly confident because things had been going so well. So off we went to lunch at a crowded mall which actually went fairly well until we were finishing up.
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I was keeping an eye on the boys pretty closely at this point because Aiden was getting clumsy and rubbing his eyes (my marathon sleeper) and Liam had already lost it once (that awesome groin punch) and was starting to have trouble sitting still. I skipped the fall clothes shopping and took the boys home. Aiden had a 3 hour nap and Liam fell apart for the next 2 days.  It started with being unable to sit on the sofa.

FASD- hyperactivity

He fell off (at least 7 times that Friday afternoon). He sat with his feet in the air, knocked the lamp over with his feet, stood on the top of the sofa, and all around couldn’t sit still. For 2 days. It’s annoying and we go through a lot of lamps, but mostly it’s just sad to watch. I can’t imagine what it must feel like to feel like you can’t stop moving. Or to constantly fall off of things.

(Like the time this happened right before the family arrived for Easter.)

FASD side effect- super clumsy

 

This is as good a time as any to mention the social and behavioral issues that go along with FASD which contributed me to keeping Liam from starting school earlier this month. Sometimes FASD looks a lot like ADHD since the kids are often really hyper and unfocussed. Which I believe is why so many kids are misdiagnosed as having ADD when the underlying issues are really prenatal exposure to alcohol.

 

social and behavioral issues with fasd

 

Back to our fun weekend. Along with all of the hyperactivity, the sillies kicked in. Liam looked like he was having a manic episode, complete with hysterical and uncontrollable giggling. Every single time I spoke to him for the next 2 days, he was out of control hysterically laughing at everything I said. It’s like he had left his body. I’d talk to him, look him in the eye and he just wasn’t there. I spent 2 days taking him over to the quiet spot to remove him from yet another insane situation. Because cause and effect don’t work on these fellows, you need to repeat things. A lot. That continued for the next 48 hours until he came down with a stomach virus and threw up. I was never so relieved to have a virus come through the house. He asked to go to bed at 5pm and slept the next morning until 9am. When he woke up, he was back to his semi-normal self. To minimize any further chaos, I kept him home from pre-school that Monday so he had some significant down time.

 

FASD- Brain and central nervous system

 

So that was our weekend. And, as a matter of fact, it really wasn’t a bad weekend at all. There have been far, far worse weekends. Like the time the boys punched, kicked, and bit each other and me for two days straight. That was fun. This is why respite is so important to families where one or more of the children has been diagnosed with FASD. A little time apart to regroup and pull it together is always a good thing. And it’s way better than hiding in the bathroom. Kidding. Okay. I’m not. But it only happened that one time.

The boys are a delight and I adore them. They make me laugh and bring joy and fun to our lives every single day. Even the really bad ones. I don’t regret taking them on and we generally do quite well. But FASD is hard. Getting to a diagnosis is harder yet. I’m not sharing these stories so you feel sorry for us. Or worse, judge. Jeez. That would be yucky. I’m sharing our story for all the parents out there who have no idea what’s going on with their children. This is particularly true for foster and adoptive parents who don’t have the benefit of knowing their children’s family or prenatal history and are struggling with their children at home and in the school system. If you’re reading this and wondering, send me a message. I’m happy to connect and help in any way I can. And if this doesn’t apply to your family and you’re reading because you’re nice….hurray! That’s awesome! Thanks for not drinking during pregnancy! 🙂

Interested in learning more? FASDfamilies.com is our sister site and is full of resources and supports.

You might also like: FASD- Part 1


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Comments

  1. Thank you for sharing this. No one really knows about FASD until it touches their lives personally. My brother and I are both FASD kids, but he definitely had it worse. He sounds a lot like your Liam. Oh my heart goes out to you and to your boys. This is beautifully written and is something that more people need to understand. Thanks, again, for sharing this!

    • Caroline, thank you so much for sharing your thoughts and your own history! That’s so kind of you. The boys are terrific but there are struggles, as you well know. All the best to you and your brother 🙂

  2. These boys are lucky to have you, someone fighting for diagnosis and someone who understands. And most of all, someone who loves them, I could just hug all of you right now. Thanks for the education, I had no idea. They are adorable too, I hope things continue to get better for all of you.

  3. Hi Jenna. What do the boys call you? Do they call you Nanna or Grandma, or just Ma? Because whatever name they know you by, how blessed are they to have you in their lives. Many grandparents would shy away from this responsibility, and yet you’ve donned the Motherhood cap for a second time and taken on this roller coaster with your boys. I have a severely disabled son, born 11 weeks premature. He has Cerebral Palsy and a Cortical Vision Impairment, but now, at the age of 24, lives independently, in his own home, with 24 hour support, and has a great life. When he was the age your boys are now, I could not, in my wildest dreams, have imagined that outcome. We worked hard for it though, and it’s a privilege for sure, but I just bet Liam and Aiden end up with a great life too. Thanks, in no small part, to you being there for them. I think what I get from todays post, is an overwhelming admiration. A bit of sympathy too, but mostly admiration. Love, Mimi xxx

    • Mimi, I had no idea! How incredibly wonderful and brave you are! It’s so interesting and inspiring to hear that other families have been there. We thought Liam and mild CP for over a year until I started to recognize the FASD symptoms. Right now they call me Momma or Mommy. I’ve tried several times to tell their stories to them at the urging of the child welfare organization but they don’t get it. Sometimes social workers are not as smart as they think they are. 😉 We’ve been watching “Meet the Robinsons” (over and over again) and it’s opened the door for some “tummy mummy” talks. We’ll get there and they’ll know their story some day. I’m not sure I thought I was so blessed in the early days, but I know for sure now that I’m really the blessed one here. Thanks so much for sharing about your son.

  4. I’ve never had to experience this in my life, so I can only imagine how difficult it must be at times. Thanks for sharing your story and helping to educate others about FASD.

  5. Wow, I have to say you are a strong woman to deal with this! And very proud of you. My heart goes out for you. But I’m happy to see these two boys have someone like you taking care of them. They’re in very good hands! I’m just doing research for school and I choose this topic. I came across your post. If you don’t mind me asking, how were they as infants? And how long did it take them to reach their developmental milestones? (If you don’t mind me asking)

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