Colin and Fetal Alcohol Syndrome?

A doctor diagnosed Colin with Fetal Alcohol Syndrome (FAS) yesterday, and Christian and I are pretty freaked out. I really didn’t believe him at first. We know that Colin’s birthmom used cocaine during the pregnancy and she admitted to some drinking, but we really thought the alcohol use was limited (and it is actually much better for a baby if the birthmother smokes crack than if she drinks alcohol because of the way it is metabolized).

Now that I’ve read some of the traits of FAS though, I’m getting more worried. We still plan to get a second opinion, but I’m definitely stressing. We thought we were going to go to this specialist and get a referral for occupational or behavior therapy and that things would get better. We just felt like we needed some extra tools in our parenting toolbox and that we should be proactive given Colin’s history. However, if he really has FAS, things could get much worse. The doctor even said that Colin might eventually need to be medicated for aggression, and that problems associated with FAS tend to intensify as children get older (mental health problems, troubles with the law, learning disabilities). I know that he is trying to give us worst case scenarios, but the appointment was pretty awful. I was in tears for most of it.  

I’ve mentioned briefly that we are having some issues with Colin, but I really had not talked about it much here. Some of it may seem like normal toddler or “terrible two’s” stuff, but we really started noticing it around 12-months (much too early). The OT we were seeing at the time (for his gross motor delays and feeding issues) and I even joked that the “terrible two’s” was at least one milestone he was hitting early.

I’ve been playing “Dr. Google” and these are the symptoms of FAS. I’m bolding the ones that describe Colin:

  • low birth weight
  • small head circumference
  • failure to thrive (he was never officially given this label, but he was very close)
  • developmental delay (he had gross motor delays, but seems to be caught up now)
  • organ dysfunction (his digestive system)
  • facial abnormalities, including smaller eye openings, flattened cheekbones, and indistinct philtrum (an underdeveloped groove between the nose and the upper lip)
  • epilepsy
  • poor coordination/fine motor skills
  • poor socialization skills, such as difficulty building and maintaining friendships and relating to groups
  • lack of imagination or curiosity
  • learning difficulties, including poor memory, inability to understand concepts such as time and money, poor language comprehension, poor problem-solving skills
  • behavioral problems, including hyperactivity, inability to concentrate, social withdrawal, stubbornness, impulsiveness, and anxiety
  • poor impulse control, poor personal boundaries, poor anger management, intrusive behavior, too friendly with strangers

There is also something called Fetal Alcohol Effects (FAE), which means the symptoms are less serious. That seems to fit better to me (and my medical degree from Google).

Colin is pretty aggressive and has impulse control issues. He hits, kicks, pinches, etc. He throws things and kicks his shoes off EVERY TIME he is mad. He runs into people head first. He steps on us or jumps on top of us, and seems to have no idea that he is hurting us.

He wanders off in public places. At the same age, Noah and Zoe would walk some distance, turn around and notice that I was far away, and come back. Colin says, “Bye bye!” and keeps going. He also goes up to random people to be picked up. He has no sense of “stranger danger.”

When we ride bikes in the driveway, we obviously don’t let the kids go in the street. The other day Colin kept going in the street. I picked him up and brought him back several times, but he kept going out. The last time I brought him back, he threw his pacifier out into the street. I picked up the pacifier and started to walk away, and he threw his shoe into the street.

It affects what we can do, too. I would never take the three kids somewhere public without a second adult, because one adult has to be focused on Colin. During the kids’ spring break, someone from Noah’s class planned a playdate at a park. Colin would not stay in the park. I had to keep chasing him and I couldn’t watch Noah and Zoe, so we had to leave. I carried Colin out kicking, screaming, and pinching me (and of course he kicked his shoe off, too). Then Noah threw a fit and started bawling because we were leaving. I was so embarrassed.

We were incredibly anxious about our vacation. On top of the fact that I had a herniated disk and pinched nerve, we knew traveling with Colin would be difficult. That’s why we spent so much d*mn money on the iPod Touches for Noah and Zoe. We knew we would have to be focused on Colin for most of the trip, and we needed Noah and Zoe to be as self-sufficient as possile. We were right to be anxious. He screamed for 45-minutes straight on one of the flights. I mean blood-curdling screaming. I was trying to hold him and calm him down and he kicked me and pinched me the whole time.

We have tried everything. We get on eye level to tell him he’s doing something wrong. We’ve done time outs. He won’t sit still in a time out, so I have to hold him, and then he starts pinching me. We’ve explained “nice touch.” We’ve tried to work on language and signing. We tried re-directing his behavior. We’ve done butt swats (I know it’s not PC to write that here, but we have). We’ve tried to make him apologize and hug Noah and Zoe when he hurts them. We’ve done it all. We are not getting anywhere.

I’m still pretty overwhelmed by all of this, so I don’t know exactly where we go from here. We tried to get Colin re-qualified for First Steps when his first year was up in February, but they did not recommend services. They saw the behavioral issues, but since the gross motor and feeding issues were better, they said he did not qualify (he had to qualify in two areas – I was pretty p*ssed at the time because his history should have counted as the second area). The doctor we saw wrote an order for therapy and an order for First Steps, so I don’t know if that automatically means we are eligible or if they could deny us again. I also don’t know if we have to wait a certain amount of time to have him re-evaluated. We can certainly see private therapists, but it will be expensive and I don’t know how much is covered by insurance. It would also be less convenient, since we would have to go to the therapist instead of having the therapist come to our house. That means additional travel time AND having to find someone to watch Noah and Zoe.

Please don’t take any of this to mean that I have anything but love for Colin. He is difficult, but he can also be incredibly sweet and loving. He’s smart and he’s funny and all kinds of other wonderful things. The doctor asked us what we thought about Torry Hansen, the woman who put her seven-year-old adopted son on a plane back to Russia by himself. I told him I thought it was pretty awful that she sent her child away and didn’t seek out every possible resource to try to help him. The doctor said that he was glad to hear that, because we were going to have a lot of work to do with Colin and that things will probably get worse before they get better. We are ready to do that work. We will do whatever it takes. I’m just really scared and stressed right now.

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29 thoughts on “Colin and Fetal Alcohol Syndrome?

  1. Oh, I feel your pain. I’ve been looking into FAS because our son’s first mother has it. It’s a scary diagnosis ’cause there are sooo many things involved. I understand why it upsets you (and you should definetly get a second opinion).
    A word of encouragement: Your son is not FAS. He is just Colin. And maybe a diagnosis will give you some new knowledge and tools to work with him.
    Bless you

  2. Thanks for your post Tracy. As you might know we are trying to Foster/ Adopt (not that its working out). Reading your words get’s me ready for some issues we might have in our future. I have read a lot and Alcohol is the worst. Big hugs to your family : )

  3. I am thinking of you. I hope the diagnosis is correct. If it does not feel “right,” get more opinions and more advice and keep going until you are satisfied.

    I hope you cope as best possible. I know you will do the best for Colin, I never even questioned it. And I sure as heck knew you were not going to put him on a plane 🙂

  4. Thinking of you. I am going to check my law/IN parent’s rights stuff when I get to school tomorrow. I am not sure how First Steps fits in, but I know it does somewhere…especially with paying for a reeval.

  5. Oh no Tracy! I have to say, I’m really sorry for the dx. (((hugs))) And I agree with Mer that if it doesn’t feel right, you should pursue that feeling. Those symptoms are all on many many lists of other disorders (and could have easily applied to my first son). Really tune into your gut.

    I’m not sure I agree with your doctor’s approach. I’m not sure scaring the hell out of the parents and not offering much hope is all that beneficial. Being a realistic and being negative – there’s a fine line. I hope you can align yourselves with a FAS specialist who can offer hope not only in the form of action but in words too. Like, for instance, I know a handful of FAS kids and while they require some specialized parenting, they aren’t anything CLOSE to do the doom and gloom picture this doctor painted.

    Hang in there!

  6. Geez, I am so sorry you guys are dealing with this. I agree with Nicki – that is definitely not the approach I would have taken if I were counseling a family with a child who potentially has FAS. Start slow, let them digest, give them realistic hope and identify POTENTIAL challenges as they are ready. “Anticipatory guidance” is the term pediatricians use for counseling families, and you don’t need be thinking about Colin in jail or whatever. You need help coming up with strategies to help Colin thrive as a toddler for now, and relevant parenting advice to help you guys in the present tense.

    Anyway, the thing about FAS is that there is a HUGE spectrum of what it could look like. The most extreme scenario is NOT what the majority of kids manifest (hence, “the extreme”). Also, if it is FAS, you are finding out so much earlier than most people. A lot of doctors miss it completely and the child misses out on potentially beneficial services. Knowing early sucks in some ways, but can really be a tremendous blessing in other ways if it allows you to come up with early strategies and helpful interventions before things ever get out of control. You guys are committed to Colin, and that is why I know you will be fine.

    Again, I am so sorry you are dealing with this. Anyone in your shoes would feel blindsided. But take it one step at a time (instead of your doctor’s approach), and hopefully that’ll make things more manageable. He’s just a baby, your baby, and he might need clearer boundaries, or other forms of discipline / reward / whatever, but a diagnosis of FAS doesn’t mean he is no longer the super sweet, smart, fun loving child you already know he is…it just means you’ll have to work on containing potential behavioral challenges that get in his way of expressing the good stuff.

  7. I am very sad to read this – not that I think you won’t be able to gracefully handle whatever comes along, just sad that you might have to.

    I also strongly disagree with this doctor’s approach. When I was given the cf diagnosis for my newborn, I was told “He will die before he’s 6.”. As you know, he didn’t – not even close…so even if the diagnosis is correct, don’t take Dr. Doom&Gloom’s prediction as a promise, only one man’s opinion of what might happen.

    One more point, one of my Girl Scouts was adopted at age 6 with FAS, and yes, there were some struggles, but today she is a happy, well-adjusted college graduate who has a husband and family of her own.

  8. Wow, how overwhelming to hear something like this. You are great at being the squeaky wheel so I know you will work out getting the programs you need. My thoughts are with you as you navigate your next steps. Take care.

    Jill C.

  9. Hi, sorry to hear of all you are going through. My daughter was quite the same at that age. I found that time out just escalated her, so I started taking away privileges. This included t.v., toys etc. I would always give her a clear warning of what she would lose and stuck with it. This was really effective after a few times. The one thing I decided right from the beginning was that FASD is not an excuse for poor behavior. So many times I hear caregivers say “she can’t help it, she’s FAS. My daughter is now 6 and is a very kind loving child. She has a learning disability and I homeschool. I too have been bit, scratched, kicked and had things thrown at me when she was younger. I think you just have to find a discipline that is effective for your child. It is true that there are many heartaches ahead of you, but there are so many more wonderful things ahead too. I keep reminding myself that I am bigger than this and I will not let it conquer me. It sure helps when I am feeling overwhelmed. Best of luck to you and please feel free to contact me anytime, even if you just need to vent.

  10. Must have been really overwhelming to hear. The doctor is telling you the worst case scenario. The best thing you can do is educate yourself about FAS. I have two foster babies -20 months old that have FAS. FAS seems very over whelming when you don’t know how to handle any of the problems you are going to run into. I was able to get training. I now feel more capable of raising a child with FAS. Call around and see if you can get a support group and some training. Its really important to remember sometimes you can’t change what the child does but you can change what you do so that the problem doesn’t happen again or make your stress level more manageable. Like your problem with the bike and going into the street. Ride the bike somewhere else where there isn’t the street. Wait for a few years and try it again.

  11. Careful reading comments. FAS is a brain damage. There are missing parts of their brain! If you treat these children like normal children it will not work. Try to get some training, read what you can. If you want to email me I would love to tell you how we handle some of the problems. It really takes alot of thinking and problem solving.

  12. Thanks for being honest and sharing this. I have no experience with any of it but I think he is a lucky little boy to have such caring parents.

  13. My husband was diagnosed with partial FAS (pFAS) a few years ago. He had a rough home life and fell through the cracks because no one had any clue that he had this. As a result, he suffered a lot of the secondary disabilities and his younger years were pretty rough, but he survived them and eventually settled down as he got older. Today he’s married to me, and is a loving and thoughtful husband, a homeowner and employed. Although having a Fetal Alcohol Spectrum Disorder certainly has its challenges, it isn’t necessarily all bad. It’s very fortunate for Colin to have an early diagnosis like this, so that he can get the support he needs to help him succeed in life. The more you can learn about it, the better, and finding a support group with others that can share their experience would also be helpful. I wish you and your family all the best.

  14. I am so very sorry. 😦 I did get shivers while reading it though because a lot of that is what we dealt with (and are still dealing with) in Jocelyn. There are some severe behavior issues that not even our county’s early intervention would touch. Ultimately, we went to Brandon’s psychologist (he’s a child psychologist that focuses on autism, which Brandon has), and he decided to try working with Jocelyn. She was ultimately diagnosed with “Reactive Attachment Disorder with Selective Mutism and possible PDD-NOS” which is a really long way of saying she has inappropriate/non-existent attachments, refuses to talk outside of the house, has severe anxiety issues, has some pretty intense aggression issues, and has very poor social skills. To say that she is a difficult child is a huge understatement. We don’t think that prenatal exposure was the cause at all, but her pediatrician and psychologist thinks there were some physical/emotional trauma issues she underwent prior to her adoption (we know her vocal cords were burnt because she went through testing that showed that, but we don’t know if that was the extent of it)

    But, I will say that early intervention is a wonderful thing. The psychologist has been able to do some remarkable things (he’s known Jocelyn since she came home from Vietnam and has been working with her for just over a year now). She actually said an entire sentence to my inlaws yesterday when they came (which is HUGE…this child won’t eat in public, won’t speak to anyone who isn’t us, won’t even look up at anyone. We’ve been trying to get her to say one word to someone else for 3 years. It actually is bad enough that most people that meet her, including speech therapists, consider her non-verbal. They don’t realize she never shuts up at home!). She’s also making huge strides in attachment to us. She still has a lot of social and behavior issues, but with her diagnosis it could have gotten a lot worse, instead of getting better. So, finding someone who can work with Colin at a young age can make all the difference in the world. I know him and Jocelyn don’t have the same history and issues, but I do know how it feels to parent a child with some severe special needs (heck, all 3 of my kids have some special needs, as you know). It’s draining and hard and most people don’t understand why you can’t go out on playdates or even to the store like “everyone else”.

    If you ever need to talk, you know how to get ahold of me. I’ve been in a similar place, and I know how hard it is…

  15. Oh, and also, have you checked out state funding? Ohio has something called PASSS funding, which is not advertised and our homestudy agency never told us about it. But the psychologist knew about it and told us–it was funding for therapies that are needed for adopted children with special needs, whether or not the special needs were known about at the time of adoption (the special needs has to be something that the child was born with or that could be attributed to pre-adoption circumstances). Even our early intervention and pediatrician didn’t know about it…we didn’t know it existed until the psychologist mentioned it. We later found out that it’s because every year it could potentially be nixed from the state budget. But, so far it’s still there and helps pay for Jocelyn’s psychologist.

  16. First I have to say, that Doctor needs to go to Bedside Manner School. Good grief, what is he thinking trying to freak you out like that?! Secondly, would I be right in thinking that the majority of FAS children grow up in their birthfamilies? And so therefore we’re talking about kids with FAS being raised by people who probably aren’t making all the best choices for their families by a long shot? So then one would expect that having FAS and also being raised in a less than optimal home environment would result in some very extreme behaviors and problems, right? I’m just saying I think Colin has a better than average shot because he has YOU and you guys are clearly going to do everything you can to help him deal with this and manage his FAS (if that’s what it is).

    Praying for you guys, as you work through all this. Take care.

  17. I think Christina has a very good point. We know you’re a great mom, so no matter what the diagnosis ends up being, you’re going to be better than average at helping him thrive. {{hugs}} -great big ones!

  18. I’ve been where you are… I remember being completely demoralized and depressed. My girls, both with FASD, are now 6 and 7. Things are not as bad as I feared at the beginning of my FASD education, but not as great as I’d hoped before diagnosis. Your Google medical degree will take you far! You are already miles ahead of many parents on this journey. Some of my greatest sources of ideas and information have come from internet support groups, especially http://health.groups.yahoo.com/group/FASResource/ and http://www.acbr.com/fas/faslink.htm
    I have a HUGE list of links I’ve compiled in the last six years. Email me if you are interested, or I can post here for everyone’s benefit.

    • Sharon-

      Thank you so much for your comment. I just joined both of those groups. I am trying to find as much info as possible. I found one Yahoo group that was for FAS and RAD, but had not found anything just for FAS. Thanks for helping me make that connection.

      • Good, glad you joined. Don’t get too freaked out by some of the posts about older kids… remember, prenatal exposure to alcohol causes a spectrum of disorders, some children end up looking mostly ADHD. Early intervention has made a big difference with my youngest, who has suffered some of the more physical manifestations. My older daughter, very intelligent, is socially maladaptive and explosive. Much harder, I won’t lie, but I still read about the more affected kids and count my blessings. Hopefully you will too. And yeah, I completely share your frustration with the school system. I can’t count on them for jack sh*t.

  19. Tracy, I know I’m super behind on commenting and have been away from reading blogs pretty much across the board for a bit, but am working on catching up. I’m sorry to hear you are having so many challenges with Colin. I can only imagine how frustrating this all has been, and how scary it is to be crossing into the land of a diagnosis. I read the blog backwards so I see that there are some additional evaluations and such being done, and uncertainty about the true diagnosis. In any case, I think you got some great insight here – and totally agree with what Christina said as well. It’s sure not going to be easy, but having knowledge, tools and professionals working with you to address the issues is hopefully going to make a big difference.

    Also, I’d love to have the password if you’d be willing to send it…

    I’ll be checking back in, hoping all of the testing (for both boys) brings some answers and relief.

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  22. Hey
    Its 2012 and I just read your article today as I am doing research on this topic for my undergrad essay in Health psychology. I am wondering how your keeping up. Were you satisfied about the diagnosis? and how have you moved on?
    I hope you are doing well with your family
    Precious

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