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.
Melissa & Doug-Leading Designer of Education Toys

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


Tips for Road Trips With Toddlers

 

I’ve been a bit absent from this site lately and one of the reasons (the best reason ever, actually!) is that we took a little family vacation. Ok, we took a major family vacation. 20 hours in a car on a road trip to the beach. With two toddlers. That’s right. 20 hours.

We’ve been vacationing in Panama City Beach, Florida forever. Liam has actually been there twice before this trip, including the month we spent there at the end of my parental leave. I was living the dream there, folks. It was fantastic. Here he is at 2 months of age, lounging on our balcony….sigh.

 

 

But when Aiden came along, I worried that we’d never travel again. I figured that as a single parent I could never manage two babies who then became toddlers on a 20 hour road trip. And I wasn’t wrong. What made this work is that my oldest daughter, Emily, came along and it made all the difference. I can’t do it alone. Not yet. So kuddos to Em for being the best auntie ever.

 

 

I have no real advice here because, let’s face it, I mostly just wing it. But I do have my “live and learn” wisdom and I’m sharing it here…..Some of it’s obvious, some of it is just what worked for our family.

 

1. PACK WELL IN ADVANCE
I took an extra day off work before we left while the boys were still in daycare and was able to finish packing and load the van the night before we left. Suh-weet. Just had to throw in the overnight bag and off we went.

 

2. DO WHATEVER YOU CAN TO MAKE THEM HAPPY
Contrary to all the advice I read cautioning parents not to slide backwards in milestone achievements, I say “let it slide”. I haven’t potty trained anybody because diapers on road trips are way easier than going the bathroom every hour. (Also, Liam looks at me like I’m crazy when I ask if he wants to try the potty). Liam gave up his “suss’ (pacifier) at daycare a few weeks before our trip and he only has it when he sleeps. I gave it to him. For the entire drive. Both ways. My daycare provider is probably not too impressed but I figured since Liam is not in the most pleasant phase of toddler-hood (We’re calling him our “threenager”)….you do what you can for a bit of peace. I took it away again in Florida and at home….He was fine with this little “suss” blip.

 

Our grumpy, soon to be, “threenager”

 

I also left them in their pyjamas until late the first morning. We landed at McDonald’s somewhere in Ohio. As an aside, we NEVER go to restaurants. I’ve tried a couple of times with a friend or family member to help. The first time Liam announced he was pooping to anyone who would listen. (He wasn’t. He was just making friendly conversation.) The second time I was too tired to eat because I was trying to keep them from tossing drinks on the floor along with everything else they could get their hands on. So I was worried about disturbing other people but seriously, McDonald’s is so kid friendly, you can’t go wrong. And they love it. Because it was a Friday morning the place was full of seniors….the boys were fussed over and adored. They had more attention than they knew what to do with. Wish I’d been half that popular in high school. Or anywhere, really.

 

 

3. LEAVE EARLY AND DRIVE HARD THE FIRST DAY
I woke the boys and hit the road at 4:30 am because all the Pinterest/bloggy advice said they’ll go back to sleep and you could travel in peace. Well, they didn’t. They basically stayed awake for 16 hours but for a really short nap. But they were interested and (mostly) cheerful for hours since this was so out of their routine. I never let my kids nap in the car so the fact that they didn’t sleep much while travelling shouldn’t have surprised me. We travelled 15 hours the first day and neither boy napped longer than 1 hour. Which is crazy because they sleep til 8:30 am every morning and nap 2-3 hours every day. Regardless, they were insanely and unpredictably happy for the first 14 hours. Then we all fell apart and stayed overnight in Cullman, AL. I was trying really hard to make it to my sister’s house which is about another hour or so away but we just couldn’t do it. This is why I believe in driving hard and fast the first day. The next day we had 5 hours to go and that felt less daunting. It also allowed us to linger at Waffle House, Liam’s favorite place in the universe.

 

4. IGNORE ADVICE THAT DOESN’T WORK
Popular advice also says to stop frequently and let the kids run around to burn off energy. Ummm, not my boys. They acted utterly ridiculous and crazed at every rest stop. In Clanton, AL, one toddler followed the beer delivery guy and got stuck in a walk in freezer while the other was behind the counter grabbing for cigarettes. This was after they all but molested loved the giant plastic M&M dude to death. The cashier was lacking in our world famous “Alabama Southern Hospitality” that day and I’m pretty sure we’re no longer welcome in Clanton.

 

Let them run loose? Awww, hell no!

 

4. TV IS OUR FRIEND
I’ll be the first to admit that I don’t much restrict the number of hours the boys watch tv at home. Don’t judge. I do restrict what they watch but I’m single and tired. I can only do so much. Before we left I bought a dual screen DVD player and they watched countless Disney movies, happily in the back seat. I bought 2 new movies that they’d never seen before which helped although, in truth, they’re not terribly picky. I bought this one from Best Buy. Love. This. Thing.

5. PREPARE SNACKS AND DRINKS
I packed a bag of individually packaged, moderately healthy snacks in case we couldn’t find anything on the road. Truthfully, they ate a lot of fries and I didn’t care that much because it was new and exciting for them to eat out. Or eat fast food. I knew we’d eat better in Florida because we rented a condo and planned to cook most of our meals at home. I also brought sippy cups. Lots and lots of them. Some of it we used and and some of it we didn’t but it was nice to know that on the last stretch to Florida, where rest stops and gas stations are sparse, I could have fed them if needed.

 

6. PLAN ACTIVITIES
Ok. I didn’t use this one at all. I made impromptu play trays for the boys and attached them to their car seats with bungie cords. Seriously. I spent weeks browsing Pinterest for ideas for DIY trays. However, I ran out of time and energy and at the last minute I grabbed two thrift store wood trays that I’d been planning to paint and used those. The boys used them once for like 5 minutes. And Liam only colored on the tray. He does what he wants.

 

Truthfully, they were either way too young or way too happy with movies to make use of all the activities that I packed. Most of those things came in super handy when we ate out in Florida but the in-car trays? Not so much. They’re still there because I think the boys will grow into them. And we’re planning more road trips in the near future.

 

7. RELAX
Easier said than done for old-school parents (aka grandparents raising grandchildren) like me. I love a good schedule for babies and toddlers because that’s what has always worked for this family. When the boys were tiny I structured everything around naps and bedtime. So I was so nervous about disrupting the boys and what could happen. Because sleep is my favorite thing. EVER. But, aside from the first night in the motel where Liam kept giggling and wanting everyone to play with him, the boys slept beautifully, napped well (and even skipped a few) and all was well. AMAZING. I brought playpens for the boys to sleep in and they did just fine. Aiden actually asked to go to bed the first night in the motel, even though we were all roaming around and the lights were on. He just lied right down and drifted off to sleep (love this kid!) For the first time in almost three years, I didn’t stick to much of a schedule and it was fine. I couldn’t believe it. They napped, they slept well, and they went right back to their routine when they got home. I was so scared! One night, after a late dinner, Aiden fell asleep standing up. In the elevator. He slept til 930 the next morning and life went on.

 

There you have it….what little wisdom I gained from road tripping with two toddlers. My standards were really low. Basically we just wanted to make it there and back alive.

I can’t begin to tell you what this trip meant to me. I have been single forever. FOREVER. When my girls grew up and moved out, I started travelling like crazy. I’d been Hawaii just a month before Liam was born and we were back in Florida when he was two months old. The hardest thing about accepting that I would raise two more babies at this stage in my life was thinking I wouldn’t travel again. It might look a little different but it’s clear that we can do it with some planning and help. Yay!

Anybody have any must have pieces of wisdom that they want to share for our next road trip in the fall?