Sometimes FAS kicks my ass

First, let me just say that I’m in a bad place right now. Usually I would have titled this “FAS kicks my a**,” but right now I am not feeling very polite about it.

Second, I have struggled over whether to password protect this or not. I don’t want to share too much of Colin’s personal struggles, but these are my struggles, too. It’s hard to find that line. I may password protect it later, but not very many of the people who have my password have experience with fetal alcohol syndrome. I guess I am hoping that someone will stumble on this and give me some sort of revelation. Yes, I have researched every possible FAS website and I belong to two FAS Yahoo Groups, but I’m just looking for something else. FAS affects every person so differently, so I’m sure this revelation I am hoping for doesn’t exist, but maybe someone has it.

Third, I LOVE Colin with all of my heart. He is hard to manage sometimes, but I am doing my best. Sometimes I just worry that my best is not enough.

We’ve had several really bad weeks. The week of the Fourth of July we tried to reason that he was just “off” because he wasn’t in school that week and blamed it on the schedule change. The next two weeks we blamed it on the fact that he was now napping at school, and the naps weren’t as long. It just starts to feel like we are always finding an excuse that things are rough and trying to convince ourselves that they will get better.

Colin is aggressive, impulsive, hyperactive, is not afraid of anything (wanders off in public), and does not understand emotions (laughs when someone is crying, etc).

His is in an ABA school from 8:30am-3:30pm. He exhibits some of these behaviors there, but does much better because he is one-on-one with his therapist. When he comes home though, it seems like all hell breaks loose. Because of Noah and Zoe, I can’t be solely focused on him. It wouldn’t be fair if I was. And, of course, I need to make dinner, pack lunches, clean, do laundry, etc, and I would love to be able to just sit down for a few minutes, too.

We’ve had a rough couple of weeks, but one day last week was especially difficult. When I was picking him up from school, he ran up behind Zoe and tried to pull her down. She broke free and said, “Stop it, Colin. I don’t like that.” He laughed and did it again. I told him to stop, and he laughed and did it again. I got down on his level and said, “Colin, look at me.” He looked over my head, down at the ground, to my left, to my right, etc, all while laughing. He refused to look me in the eyes.

When we got home, I was changing his diaper and he smacked me, hard, for no reason. When I said, “Colin, that hurt me,” he just laughed.

A few minutes later he was playing in the basement. I heard Noah yell, “Colin, stop! That hurts me. I don’t like that.” After Noah said it twice and Colin continued to hit him, I intervened. I said, “That is not nice. You are hurting Noah,” and he laughed.

I brought him upstairs and put him in time out. As soon as he stopped screaming, I picked him up and brought him to the couch with me. He was calm and we had a nice few moments. Then he stood up and jumped on my leg. It hurt really badly, and I yelled, “Owwwwww!” He looked at me, laughing, and said, “You gonna cry, Mommy?”

It is so hard when he laughs like that. It was especially hard when he said, “You gonna cry, Mommy?” Everyone keeps telling us that he doesn’t understand and that he is just emotionally immature, and I try to remember that, but it HURTS. It hurts my heart. I know I shouldn’t let it, but sometimes I just can’t help it. It’s hard not to feel like he is doing it on purpose.

I am scared imagining how much harder this is going to get. Our doctor tries to reassure us that it’s not that it gets harder, but that the challenges will be different. I don’t know. If we can’t control him when he only weighs 30 pounds, what are we going to do when he’s a teenager?

His ABA program manager came over to our house Friday afternoon to observe. I was afraid Colin wouldn’t act out while she was there, but he came through. He hit Zoe and later hit one of the dogs. His program manager showed me how to put him in time-out and not acknowledge his behavior. She thinks that he just feeds off of attention, negative or positive. They want us to put him in time out and not give him any further attention, other than silently moving him back to his time-out spot (think Supernanny-style). So, rather than getting down on eye-level and trying to talk to him, we just say, “You do not hit Zoe,” and send him to the time-out spot. Then we wait for him to stop getting up, banging his head on the wall, flopping on his stomach, etc, and finally sit against the wall nicely before we let him get up. It’s a work in progress.

It is so hard, because there are times when he is so good, too. We went duck pin bowling Friday night. He was a little fidgety and he had to be reminded that he couldn’t stand close to the lane several times, but he was so good about waiting for his turn. He also did really well when we had family over before duck pin bowling. If he has enough attention and/or he is in a structured activity, he usually does pretty well. Unfortunately, that’s impossible to maintain every second of the day.

Colin’s doctor mentioned Adderall to us about eight months ago, but we had resisted. He’s just so young. After the last few weeks though, we decided maybe it was time. I know many people are opposed to medication, but believe me, it was not a decision we came to lightly. We filled the prescription Friday night and gave it to him Saturday around 10am. At noon he fell asleep with Christian on the couch (which never happens). At 12:30pm he started puking, and he puked for the next several hours. He said, “Mommy, hold me,” (which he has NEVER said to me before). Parenting fail. I felt awful. We contacted our doctor, and he said we could try a smaller dosage, but now we are even more hesitant than we were before. We haven’t given him anything since.

FAS has changed us. We don’t do as much as we used to do. We had to turn down an invitation to a birthday party at a restaurant. Colin just can’t sit still long enough, especially with a big group of people. When we do go to restaurants, it’s fast food, buffets, hibachi grills, or Mongolian BBQ since all of those things are quicker and/or interactive. He just can’t sit at a table and color or play with a small toy. It’s too hard for him and too stressful for us.

We don’t go out in public as much. We avoid crowded places. We went to the Asian Festival in Columbus over Memorial Day weekend. I posted lots of cute pictures, but I didn’t mention that we lost Colin twice in the less than three hours we were there. The first time, Noah had a bloody nose. Christian went to find some tissues or paper towels. I was helping Noah, and Zoe and Colin were standing right next to me. A second later, Colin was gone. Another family we knew was close by, so I asked them to stay with Noah and Zoe while I looked for Colin. We were in the children’s area, so I tried not to panic. I knew he had just seen something he was interested in and he’d gone for it. Still, he was gone for several minutes. By the time I found him in a little playhouse, I was crying and almost hyperventilating. He just looked at me and said, “Hi Mommy!” with a smile. He had no concept of me being upset.

An hour later, we watched a martial arts show. There weren’t many seats, so I sat with the kids while Christian stayed about ten feet behind us with the stroller. When the show was over, I said, “Come on, everyone. Let’s go to Daddy.” I looked behind me, and all three kids were following. I looked back a few seconds later, and Colin was gone. Again, I tried not to panic. I knew he had just been distracted by something. About a minute later we found him by the stage. Again, he didn’t understand that we were upset, and he was in no way afraid of not being with us.

When he had his tubes removed a few weeks ago, the nurse came with a wagon to get him for surgery. She said, “Do you want to ride in my wagon?” He jumped right in and didn’t look back. I’m glad that he went back for surgery without any trauma, but it terrifies me that ANYONE could ask if he wanted a wagon ride, a piece of candy, etc. and he would just go.

There are just times when I feel so scared, and lost, and broken. Sometimes FAS kicks my ass.

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18 thoughts on “Sometimes FAS kicks my ass

  1. Hugs!!!! This will not be an easy road … for sure! Although, I don’t have any direct experience, I am a special ed. teacher and have worked with children like your son. There will be MANY ups and downs. Don’t beat yourself up … just keep doing the best you can! Bottom line, do whatever it takes to make his life easier … if medication helps him … do it! Don’t forget to ensure you get some support and time out for yourself …. you will need it!

  2. Oh Tracy, I feel for you! You’ve done so much and it must be exhausting. Truly. Do you find reading other FAS/adoptive parenting blogs helpful? You’ve probably already come across Urban Servant. Wish I had some other good ones to recommend. Big, big virtual hug!
    Was the Adderall reaction related to his earlier stomach problems? Are you going to try a different med?

    • I haven’t heard of that blog. I will check it out.

      We don’t know why he had the reaction. It could have just not agreed with his stomach, or our doctor said it can cause headaches and that could have caused the vomiting (like a migraine). We can try the Adderall at a lower dose or we can try a different med, but I think we’re just putting it on hold for the time being. It was so hard to come to the decision to medicate, and since it didn’t go well, we’re a little gun shy right now.

      • I don’t blame you for being gun shy – seems like a very bad reaction! I know I would have a lot of anxiety about Colin’s hurtful behavior and seemingly lack of empathy, not sure that’s it? Some RAD/adoptive parents describe similar behavior, not that it’s related in any way. Just thought I would mention a couple welcometomybrain.net and http://couldntmakeitupifitried-jen.blogspot.com/

        Wishing you well.

        • Yes, I do have a lot of anxiety about Colin’s hurtful behavior and seemingly lack of empathy. I know it seems similar to RAD, but I thought RAD was more common in kids that had been in orphanages or foster care. He came home with us at two-days-old, and he was an AWESOME, loving, cuddly baby. I am looking into it more, because I know it’s not impossible, but the diagnosis doesn’t seem to fit (even though some of the behaviors do). I was a little more concerned about it a few months ago because he never said, “I love you,” etc. He is saying it more now. He is happy to see me when I pick him up from school or when I come home from work. He doesn’t snuggle for long, but I think it’s just because he can’t sit still. I wish he could. I think even a little more snuggling would make things a little easier on me.

          • I mentioned some RAD blogs hoping that they might be helpful in some way since the behaviors of kids affected by FAS and RAD are both so challenging and related to irregular brain processes. I agree with you that RAD is not likely.

            The lack of snuggling could be from some of his sensory issues? It probably takes so much more energy to plan complex movements, to listen carefully or try to control his impulses — things that aren’t as hard for other kids.

            Could his lack of endearments be connected to a speech delay? My son’s almost 4 – it took him a long time to say those all important words – maybe two years? Is Colin’s language (as in number of words, sentences) typical for his age?

            Does deep pressure work for Colin to calm him down? Would this work as a way to get some touch time with the little man?

            It sounds like your family life has changed considerably – and you’ve lost a lot of flexibility. I’m sure it doesn’t feel fair that now Noah and Zoe have more schedule limitations.

            It was hard for me not to project my anxiety about my son’s problems on his behavior even if what he was doing wasn’t that bad. I would think of the future and be so scared for him! Colin has some scary behaviors – like not staying with you in the park, my blood pressure would be sky high.

            You are smart and resourceful and used to being able to solve problems. Parenting is hard enough in the best circumstances. Colin certainly is a cutie pie and I’m really glad that you are his mom.

            So I blather on again, so sorry! 🙂

  3. I don’t have any advice or wisdom but I just want to say that you are a wonderful mother and you are making a difference in his life!!

  4. Big hugs from here as well. It is not easy. And whatever you think you had figured out changes and shifts as he gains new skills and cognitive abilities.

  5. Hang in there, and as hard as it seems to believe, it sometimes does get better. Really…try to focus on the now, because when you think about the later it gets more overwhelming.

  6. My heart goes out to you and Christian, stay strong mama! It sounds heartbreaking, but I know you’re doing all you can.

    I don’t have any direct experience with FAS, and obviously I don’t have my own kids – but if I can offer anything, it’s the nugget of possibility that you might want to look into naturopathic/chinese medicine routes? Or, the possibility of any currently running clinical trials? (they’re not all medicine based, some are behavior research)

    I have a really complicated medical file myself, and alternative medicine has been the ONLY thing that has made a difference in my health in the last 4 years. I know it’s not very mainstream in the Midwest, but there are a few. I don’t know of it being used specifically in FAS, but I do know they have a lot of success in autism, ADD, seizures, etc in kids. Might be worth a google search? Also,

    If you want to look for research, you shouold look at clinicaltrials.gov. it’s a neational registry for all research. Good luck!

  7. I wish I had some words of wisdom. I wish I lived closer so I could help you out in some way. I just wish things were easier for you. Tons of good thoughts coming your way from CA.

  8. I am just catching up after several weeks. You’ve had a lot going on. (By the way, Lya just stopped napping too–I feel very similarly about the whole thing.) I don’t have any advice regarding FAS, but I’m thinking of you. I hope you find the support and resources you’re needing.

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  10. I don’t have any advice but I’m thinking of you. I have worked with several families who had foster children with FAS in the past during my EI days, and I came to know how difficult it was.

    Is there a support group on line or in your area?

  11. I’m so sorry. It sounds like it’s been a really difficult summer. I think the tough thing with FAS is it’s really hard to know its trajectory, since everyone seems to be different. Thinking of you guys.

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