The Look of Horror When I Tell You My Child Has FASD

Something has been bothering me for the past while. As much as I have tried to forget about it… I can’t. It’s eating me up inside.

It’s that look you get from someone when they find out your child has FASD (Fetal Alcohol Spectrum Disorder). I never meant to have this happen to my child. I never meant to hurt him. I didn’t want his brain to have permanent damage. But it happened… and I can’t change it. I love him and I always will. He deserves the best I can give him and it has been a struggle with many ups and downs, but still, I am thankful for each day.

The day Lego was diagnosed, I was considering just telling everyone that he was autistic. I didn’t want to admit this mistake… this damage that I had inadvertently caused my child . But over the next couple of weeks I started considering this thought. I couldn’t lie to people and say he was autistic because he wasn’t. He has FASD and that will never change. No matter how much I will it away, it will always be there. Over this period of time while I was entertaining this idea, I hadn’t noticed a change in myself, but when I did, it was like I hit a wall.

About 2 weeks after the diagnosis, I decided that I couldn’t say he was autistic. That was just wrong to say. I thought to myself that I could either sit in a corner, cry my eyes out and shut out the world completely, or I could pick myself up, dust myself off and do something about it. So that’s what I had decided to do. I felt this had happened to me for a reason and I was meant to do something with this. I just wasn’t sure what that would be yet. Tech and I talked it over and he agreed that maybe I should do something but what that was he wasn’t sure. I told him I would figure that out. The next person I told was my mom and she cried. She was so happy that I had come to this decision because she didn’t want me to feel like I had anything to hide.

Just after I decided this, I started this blog, as a way to release some of my thoughts, feelings and to let others know anything new I am learning on this journey. Please remember that because this is so new to me, and my family, I haven’t fully figured everything out yet. I’m still learning about FASD and how it affects my son and how it affects others. It is like the autism spectrum as where no two people are exactly the same.

Just recently I went to my youngest son’s (Monkey) IPP meeting for transitioning to kindergarten. It was while in that meeting that I really encountered that look for the first time. There was myself, Monkey’s aid – Mrs. Wonderful, his Preschool teacher, the Kindergarten teacher that he would have next year – Ms. English, a speech specialist and our area’s PUF coordinator.

The look came from his preschool teacher when the PUF coordinator asked if Monkey was still going to be tested for FASD next year. Now, I am sure I told the preschool teacher that Lego was diagnosed with FASD, because it was even mentioned in the last IPP meeting for Monkey that he would be tested when he turns 6, because Lego and Monkey are very similar in a lot of ways (this is all for precautionary reasons). The Preschool teacher has been at every IPP meeting this past year so she knew it was in the IPP. That’s when the preschool teacher looked at everyone else but me and said “FAS?! Isn’t that Fetal Alcohol?” and everyone went silent and waited for me to say something. She gave me the look of horror that made me feel absolutely horrible and in my own mind all I could think was “She hates me and is disgusted because she can’t understand why I could have done something so horrible to my child, when it is preventable.” And she just kept staring at me. I finally found the words somehow to say “Yes it is.” And then I couldn’t hold back the tears anymore and I completely broke down. The other team members were very understanding to the situation and not once did I feel judged by them. I felt supported, so I took a few minutes for me to regain my composure again so I told her ” You need to understand that he has FASD, and that there were so many factors in our situation, that they really couldn’t say that it was completely due to alcohol.  Between the abuse I suffered when I first became pregnant, the alcohol I consumed before I knew I was pregnant, the stress of my relationship breakdown, the medications they had to give me to keep me from having a nervous breakdown, a tooth infection and extraction when I had 6 weeks left to go in my pregnancy, and Lego being born blue with the cord wrapped around his neck all played some small role in this.” When I finished I broke down again but quickly regained my composure. The teacher looked at me and apologized and said “At least you’re was doing something to benefit your kids now and that obviously I never meant to hurt him.”I know she tried to make it better, but the damage was done. I was so hurt and angry that someone that works in the school system can judge me just like that and then try to apologize and make it better. I rally had nothing left to say after that. We wrapped up the meeting just shortly after and walked out to my vehicle where I sat for 20 minutes and cried like a baby. I felt so humiliated and I felt like I had failed my child. What gave her the right to judge me like that when she had no idea what had happened at that point in my life. I was angry. And that’s when I decided that people really needed to change their understanding of FASD.

So please, when someone tells you that their child has FASD, please don’t judge them. Don’t give them ‘That Look’ . You don’t know their story. Maybe the child’s parent is the birth parent. You have no idea the guilt they carry every day – I know I do. Maybe the child is a foster child or adopted. Foster parents and adopted parents get ‘That Look’ too. And it still hurts just as much. Ask about their story, and if they are willing to talk about it, you might learn something new. If they are not willing to talk about it, don’t push them. Just tell them that you’re there if they ever feel like talking. Parents of Kids with FASD just want their children to be accepted and understood just like everyone else.

 

A Trip Of A Life Time: Conquering Fears

Drumheller

The past few months have seemed pretty crazy around here for us. But this month more so than others. Lego and I went with his class to Drumheller for a 3 day, 2 night adventure. He had been really emotional and angry for about 3 weeks before the trip but none of us clues in to why until the day before we left. His teacher had asked them to write a paragraph in class about what they were excited about and what they were not excited about. His whole paragraph was “I don’t want to go” written over and over again. His teacher told him that he couldn’t miss out because it was going to be so much fun.

The next morning getting Lego ready was like pulling teeth. We managed to leave the house on time, so for as rough as it was, it could have been worse. The school had rented a charter bus so Lego thought it was really cool that we could watch movies, but when it came time to pick a seat, he got a sad look on his face and said he wanted to sit in the back with his friends but nobody wanted to sit with him. I asked him if he wanted to sit with me but he just shook his head and moved up to the very front of the bus by himself. I was heartbroken for him, and before I could even get to him one of the other mom’s who works with him at scouts, took him by the hand and got him settled into a seat near the back with the rest of the kids. She helped him engage the other kids and then she quietly came back to her seat. I thanked her with tears in my eyes because had I tried to do that it very well could have caused a meltdown.

It was a 6 hour trip from where we live so I talked with his teacher for a bit. This is when he filled me in on the paragraph Lego had written the day before. Again, I teared up because this was one of those situations where it was very apparent that Lego was struggling with not knowing what was going to happen. I told his teacher that I had been dreading this as well because I wasn’t sure how well he would handle everything and I didn’t want to hold everyone else up in turn. We talked some more and I decided that I was going to take the opportunities given on this trip to face some fears and show Lego that when the opportunity arises, sometimes you need to try new things.

As soon as we got to the Royal Tyrrell Museum, we were hiking the badlands with a tour guide. Lego actually did really well and really tried to answer the guides questions. It was really hot that day so the sun was bothering his eyes. I gave him my hat but he really didn’t want to wear it. Once we were done the hike, we were led to the cafeteria, where they had snacks prepared for us. We got a rundown of our itinerary and then it was off to the next activity. We had to wander the museum, and answer the booklet of questions we were given. Because Lego has a hard time reading, I was given the answer key. We only had an hour to find the answers and it was going to be a bit more challenging than I thought. What I did was read the question to him and then also give him the first letter of the answer we were looking for. When he would find the answer I had him spell it out loud and I wrote it down for him. This worked out awesome and he was able to get it finished.  Then the class was led to an onsite classroom where they played trivial pursuit about what they learned earlier in the day. When we had supper, Lego was so hungry that he actually ate a decent sized meal. Once supper was finished we headed to another onsite classroom where we got to look at fossils and then make our own fossil castings. As soon as we were done this activity, we were on to the swimming pool for an hour of fun. Then it was back to the museum for our last snack, and finding a place to set up our beds in the Hall of Dinosaurs!! Lego had a hard time going to sleep that night but once he was asleep he was out. I didn’t get much sleep that night however, there was too much noise. Sometimes I really hate being a light sleeper.

Drumheller 3

The next day they woke us up with an announcement over the loud speakers, threw on all the lights and then played “I Am A Paleontologist” and it was so funny to wake up to. After breakfast we got to head to the gift shop and picked out a couple of cool geodes to bring home. The last activity was playing another game in the theater to show how much we learned. Once we finished this we gathered up our bags and loaded the bus for the next adventure at the hoodoos. The kids had a lot of fun climbing but we decided that the trail was a bit washed out for them to keep climbing. There was a cave about 3/4 up the hill and I turned to one of the teachers after the kids were down and said ” You know, I think I can make it up to the cave” and her response was “Absolutely if you want to give it a shot then go for it”. So I did. I did make the mistake of not having water with me and it was a tough climb but I made it to the cave and took a break for a few minutes and then decided to climb to the top. The trail from the cave to the top was a lot harder than it looked and I actually scared myself a bit when I realized I was probably crazy for doing this by myself. But I kept going. I made to the top and it was so much hotter than it was when I first started the climb. I took a break for a few minutes to catch my breath and then started the climb down. When I got to the cave I emptied out my shoes because they were so full of sand and that’s when I realized my cell phone was gone. It fell out at one point when I fell down and I didn’t even realize it. It was about 150′ from where I was so I had to climb all the way back up to get it. I am surprised I even found it because it was almost buried in the sand. I picked it up and dusted it off and headed back down the hill. By the time I reached the bottom I was exhausted.

Our next stop was the Atlas #3 Coal Mine. It was really cool to look at but I wasn’t sure I wanted to climb up the inside of the conveyor tunnel all the way to the inside of the mine itself. We got on our hard hats and headlamps and headed for the tipple house. I am terrified of heights  and this was the one thing Lego had not wanted any part of. We all started walking up single file and I started to get scared because I could feel the boards wiggling under my feet and there were small gaps between the boards where you could see the ground. As I’m sliding my hand along the wooden rails watching every step I take, we come to a spot where I have to step over a hole in the boards that is covered with plexiglass. By this time, I am stuck with my back against the wall, crying my eyes out a barely able to catch my breath I am so terrified. Had it not been for my good friend Epona, and Lego’s teacher Mr. Ontario, talking to me and not really giving me a choice but moving forward I would still be there. Once we got off the conveyor ramp, we passed through a small door way where it got really closed in and dark. We were finally inside the mine and on solid ground. About half way through we stopped and our guide explained that we were about 40′ underground and the panic set in again for me. I was able to keep my composure somewhat and when we finally got out of the mine I was able to catch up with Lego and he said “Hey mom, that was a pretty cool walk. I’m glad I didn’t miss out. Do you think we can go again?” and I said “Nope. Not happening” and he started to laugh at me.

Drummheller 4

We walked down from the top of the mine and the next part of the tour was the tipple house. So this time Epona said to me “If you make it to the top without crying or anything I will take you horse back riding one weekend when we get back.” I reluctantly agreed. I still struggled going up the tipple house but I made it. Epona and I talked quietly for a few minutes and then all of a sudden a pigeon flew right by my head and I screamed making everyone laugh. Then shortly after as we were turning to start walking back down, our tour guide jumped on one of the shakers and made such a loud bang I screamed making everyone laugh again.

Drumheller 2

Once we finished this part of the tour it was time to load the bus and head to the East Coulee School. I was eager to see how Lego was going to handle this part of the trip because he doesn’t understand the whole aspect of  role-playing due to how his brain works.

When they were ready for us at the school, the teacher rang the bell and we all walked in and she said “Boys make one row, girls make another.” and then told the boys to follow her and the girls were to wait till she came back to get us. As the boys started walking I had to catch up to Lego to tell him it was ok and that she was role-playing. It was just pretend. He caught up with the rest of the boys and I got back in line with the girls. Then the teacher came back and told us to follow her to the classroom. We all sat down in the desks and she wrote her name on the blackboard. Her name was Miss Morrison. Next we recited the Lord’s Prayer and sang God Save The Queen. She came around a checked our hands to see how clean they were. One of the chaperons was called a floosie for wearing nail polish. There were little squares on our desk to tell us who we needed to pretend to be when called upon. There was also another square to tell us what we had brought for lunch. For those that had no lunch, they had to go up to the front of the class and they were given cod-liver oil. At one point, another mom and I got into trouble for talking so she drew a circle on each end of the board and we had to go and stand with our noses touching the black board. It was so hard not to burst out laughing. Once I sat down the teacher brought out the strap and snapped it in her hands. As soon as she did, Lego bolted from the classroom. I had to catch him in the hallway and said look it’s just pretend. When out in the hall way Miss Morrison brought out one of the adults and pretended to give her the strap so it was a good way to show Lego that it was pretend. I was able to get him back in the class and seated. Shortly after she finished and asked what was different about going to a school in 1934 compared to going to school now. I told Lego how proud I was of him for coming back in the room even though he was scared. After this we got a tour of the school while they got ready to serve us dinner in their cafe. After dinner the kids made pinwheels and then it was off to the Pentecostal church to bunk down for the night. Lego had a hard time going to sleep that night. I didn’t get to bed till 1am.

The next morning we all woke up at 6am to get packed up and head back to the school for our breakfast. Then I looked around for a bit while the kids did another craft. After we finished it was back to the mine for a short train tour and then we headed to a nearby park to burn off some energy before the long trip home. I talked with Lego about how proud I was of him and how well behaved he had been on this whole trip. The trip home was fairly uneventful. Doing this trip has made me realize that I will definitely head back with Monkey and Bright when it is time for them to go as well.

If you ever get a chance to check out Drumheller, Alberta, take a trip, you won’t regret it. I am hoping we can head back maybe next year sometime.