Fetal Alcohol Syndrome testing

Here in Michigan, Medicade has have the 26 visit thing too. Our problem was, getting the caseworker to approve of the children getting the help they so desperately needed. They were in care 9 months before it was approved. (even after it was proven they were sexually abused, with 2 care house visits and a warrent for the arrest of the boyfriend!) The oldest sib that lived with us needed much more therapy. When he went to live with family, they stopped his meds and therapy...then he perped again. Now, he is back in therapy. I do not know how it is being paid, as he used most of the 26 times in our care. The four year old has benefited greatly -- however, we supplemented his therapy paid by medicade, with personal clergy therapy done for free at our church. It also helps that my husband and I have counciling experiance (geared more towards adults, but there were somethings we could down size for the younger ones!) However, with the 6 year old sister (in another foster care home) when her initial 26 medicade expired, they deemed her 'split personality' and 'RAD'. Somehow, they were able to re-write the request, so she will be starting another session coming up, and medicade will pay for that. The therapist in this office says that with all the cut backs with medicade, in order to help out the ones who really need it, they have had to be really creative with their request. Too bad more therapist offices are not like that!

I'd check with the North American Council on Adoptable Children to see if there's anything that can be done with your adoption subsidy to ensure that the children get weekly therapy. To only do half of that is crazy.

Excuse me, I'm "catching up" on reading forums, but I wanted to participate in this conversation...Our social worker is sort of the opposite of Mammie's, she is totally pushing for fs to be tested for everything there is a glimmer that he might have. When I asked b/c some of the testing seemed a bit "over the edge" to me and his regular doctor, she explained that if there is something in the records indicating something and post adoption something shows up we could go back to the DSS and they'd be liable so they want to test EVERYTHING. It started w/ how small he was, he was referred for a developmental eval and to infants and toddlers. There were NO delays from the developmental, so infants and toddlers closed the case, but the devel. people make recommendations, that's part of their job. So they said I "could" (they viewed me as the adoptive parent which was a status I didn't really have "yet" who could make those decisions) see an orthopedist b/c he's slightly bowlegged and walks on his toes (he was 13 mos, it could correct on it's own), could have his hearing tested if I really wanted to b/c at 13 mos his receptive language was 12 mos and expressive was 15 mos and that's a "slight discrepancy" and b/c he has FAS/FAE characteristics and was exposed in utero (and that's their explanation for his teeny size) we could see a geneticist and find out if the flattened philtrum, small size and single palmar line were FAE or hereditary... So I thought, well, I have the heads up, if I'm ever concerned I can follow up on this, but they found that he's perfectly healthy, w/ above average intelligence, so I'm not concerned b/c what can they do about FAE anyhow? (I mean, what CAN you do except realize that it explains some of the behaviors? What therapies are out there? I guess I really don't know). Well, now I've been good and we have appts - audiologist in May, orthopedist June and genetecist in July and sw tells me to get a nutritional eval too. So I guess by the time we adopt him we'll know as much as possible about what can be tested out of him.

Sandee, DO get him evaluated for FAS/FAE. Knowing makes a huge difference. There ARE interventions that make a difference if you catch these things early, and it sounds like your child is young enough. Also, it helps to understand, for example, memory issues that these kids have. My children have average IQ, but I can see that they do have memory issues that make a difference in how they will learn. And you DEFINITELY want your son's needs totally documented, because getting things in your subsidies changed post-adoption is a nightmare. Good luck. Glad you made the appointments. Let us know how things turn out.

There's no question that he's going to be tested. I was just commenting on the difference in his sw'er versus others and how being new to fostering I didn't understand why he was being referred for and tested for everything when he was doing well.... I know the kind of problems that FAE/FAS can cause and already have that "heads up". The question I'd really like to have answered is: What types of therapy are there to help a child with FAS/E? Most of the problems caused by FAS/E are irreprable, they aren't "fixable", so what types of services does having an accurate diagnosis prepare you for?

I'm pretty new to the FAS world, but I'll try to answer your question. In my children's case, they are being evaluated for occupational therapy for sensory integration, fine motor, and visual perceptual issues. There are things you can do to improve functioning in those areas. My children seem to have memory problems that affect learning. That is a fact of their life, but it is very helpful to know that, and to embrace the accommodations that make learning easier. My daughter naturally looks for cues, like the ABC's posted around her kindergarten class. I asked her to get me a dishtowel from the linen closet, and she brought one with her from the kitchen so she would remember what it looked like. I think my daughter has some hypotonia (weak muscle development). I have her in sports, including a tumbling class that seems to be improving her strength. You cannot take FAS away, that damage has been done. And you cannot really change their IQ that much. But you CAN help them maximize their abilities. It does help to have the diagnosis, it really does.

Hello Ladies! It took a while (our application spent almost a month down in the mail room at University Hosipital!!!) but we are getting the FAS testing done at the U of M FASD Diagnosis Center May 17th at 11:30am. Anybody reading this from Michigan, who is going to have the FAS/FAE testing done in Ann Arbor, your contact person will be Marie Heys. She is FANTASTIC, and will e-mail you within hours of any question, big or silly! They really need to clone this woman, as she has been so patient with our inquiries. Also associated with the parent support is Betsy Soden. She and Ms Heys have been of great help, even taking my questions (reguarding a project called Early On) to a meeting at the state captial! These two women have greatly impressed me, as I have been lost at sea with overworked caseworkers with attitude. Ms Heys and Ms Soden were a breath of fresh air! Also, on a side note, anyone in Michigan who needs a good FAS on line support group, I strongly suggest checking out the VERY ACTIVE folks at FaSAFASD @ Yahoo groups. This group is for Michigan families and other caregivers who are affected by Fetal Alcohol Spectrum Disorder, also known as Fetal Alcohol Syndrome/Effects (FAS; FAE). Other related topics: adoption; foster parenting; medications; IEP (Individualized Education Program); IDEA (Individuals with Disabilities Education Act); Sensory Integration Disorder (SID); Asperger's Syndrome (AS). The comment on the therapies...I can only tell you what I know (which is limited, but I am still trying to learn) and why my husband and I are going forward with the testing, even though there is no therapy to help him. We need to know how deep the FAS/FAE effects our foster son, so we can base how we will 'counter attack' the situation. Such as... Disapline will be modified, taking an approach that he will be able to learn from. Even teaching can be changed up, to reach him at HIS level, and relying more on schooling at home than in the class room. There are things we can do to beef up other, more positive attributes. The FAS will never go away, but we can learn to work with it and around it. By actually knowing that FAS/FAE is the culpurt, I can stop being a medical detective and concintrate on learning all I can about FAS and how deeply it has affected my foster son. I can augment my parenting skills to accomodate the disability, instead of trying to correct the uncorrectable (or waste time on a goal that will never come to term, simply because he is unable to comply.) This approach can only help the child down the road...whether in my home or if he should go back to family. Also, by getting him tested and having it documented now, not only helps for adoption subsidies, but to obtain special classes at school if needed. (Which by the way, I have heard is a real PAIN, because in this day of cut backs, programs for the needy are the first to go). We also have to look at his DISTANT FUTURE: a diagnosis now will help him with discrimination infractions(whether work or school), possible disability insurance and/or benefits, on the job security, future college or trade school scholarships, etc. I know this really does not answer your question, but I thought I would try to spell out why we are pursuing it.

Hello all! I have been very busy lately - a sick husband (9 days of missed work due to a viral infection), a foster parent seminar in Battle Creek last weekend, a tour of the state Captial (after the foster parent rally) on Monday, and a TON of laundry and housework to catch up on coming back home! Right now, I am a little miffed. Quite possibly I will be posting this message in another area, because I am more than a little miffed. And I know there is nothing anyone can do. I just need to *seeth* for a bit. So be warned, and please forgive me if I offend. As you all know, I have the FAS Diagnosis appointment for my 2 year old foster son. It will be next Tuesday (May 17) at 11:30am at U of M in Ann Arbor. It will be good to get some answers. Tomorrow, we have an Nurologist appt (Dr. Gupta - spelling might be off on the name) at 11:15 in Southfield. Now...for the venting part...(and PLEASE do not feel I am being sour grapes here! I am just at the end of my rope, with the termination trial coming up here on May 31st) MY CASEWORKER IS DRIVING ME CRAZY! (Not that I had far to go, but that is besides the point!) On Tuesday, right after visitation, my husband was talking with her, and brought up the fact that both of the foster boys have gotten a diagnosis of RAD. Not full blown, but effected enough that we have had to alter our parenting skills to acommendate and re-direct some things. The caseworker stood there, in front of the aide and the other foster mother, and argued that they did not have RAD - and that she should know, as she has seen it in other children and our boys do not have those symptoms. These boys have been diagnosised by a Physciatrist (spelling I know) and have responded well to in home therapies designated for RAD children. My husband then brought up the date for the FAS testing, and the caseworker became quite indignant that the 2 year old DID NOT have FAS because the biological family all agreed that the biological mother did not drink "much" during her pregnancy. Besides, she had worked with enough children to see that our foster child did not look like those other FAS babies. My husband reminded her that one did not have to drink "much" for the unborn baby to be affected with FAS and that one did not have to have the 'physical attributes'. The caseworker got really worked up. She then became very 'snide' and said, "Well, when ever foster parents go to these stupid workshops, they always come back thinking they know everything, and trying to tell me how to do my job." My husband then reminded her that we have been talking about FAS long before we went to any workshops (which by the way, we have done 38 hours of training taking in 2 conferences in six weeks, and neither of them have covered FAS - something that really needs to be addressed). She blew us off, saying we did not know what we were talking about, and took off. This is the same caseworker that has not taken us seriously on any quest we have done (medically speaking) on these boys. So far, we are batting 1000%. (And I give all the credit to God, helping us to disern what is going on). I am not putting down all caseworkers. I know they are overworked and have all this stuff they have to go through. But what on God's green earth do we have to do, to prove we are not simpletons here? We live with these boys, 24 hours a day, 7 days a week, for the past 18 months! Does she think that I have nothing to do, but to run around to all these doctor appointments, kids in tow, chasing unicorns and dragons? Some of the test we have paid OUT OF OUR OWN POCKETS because we were so sure that was the problem! These children need help! The natural family never did this (and they still don't with the children in their care, although their symptoms are simular). Even when our medical investigations have panned out (such as the major food allergies, the ricketts, and the RAD) and we bring the evidence to the table, both the caseworker and the natural family 'dismiss' them. It is not like we go off 'half cocked' with no reason. We are like medical detectives. We study. We research. We educate ourselves. We call and ask questions. We do all the plimainary stuff. We get on the internet. In the end, if the evidence is weighty, then we pray about it and go forward. If If we don't do it for these children, who will? We want to give these children a fair shot. Life has dealt them a bum hand on some things. Problems need to be addressed and handled. If we get to adopt, great, we are ahead of the game, ready to deal with the problem head on. If the children go back to the birth mother or the biological family - ok - we have done the leg work, and we can help train them on the special needs these little guys have. As for the FAS...I don't wish that on any child! However, something is not right with this little one. He has so many of the signs, that we felt it was worth getting him tested, even if it is to eliminate FAS from the list. Why is this caseworker fighting us so hard on this? I would think she would want to know one way or the other. I just don't understand. I am not complaining about doing this for the foster children - this is one of the things we are suppose to do. Yet, it would be nice to get some backing from the caseworker, instead of a bunch of crap and putting us down, just because we are doing our job. Wheww! Thanks for letting me vent. I know there are no answers out there, but just having you all let me cry on your shoulders for a minute or two...well, it just seems to help. I hope I did not sound too much like a lost cause! I'll let you know how the test come out.

Mammie, Your caseworker is a complete idiot on a massive ego trip. She probably resents what she considers your habit of proving her wrong and embarassing her. Your post was very measured and fair. Don't worry about foster parents not understanding--we understand, all too well. Thank God your children have you to advocate for them! Think of the thousands, or tens of thousands of foster children whose RAD and FAS go undiagnosed! What a world of suffering and confusion, for the children and the foster and adoptive parents who try to love the kids out of it! And no, the state NEVER offers training on these two critical issues. For shame! Check out the NACAC conference. Last year they had several trainings on FAS. (I remember thinking, wow, those poor parents, what incredible strength, I could NEVER do that. God must have found that very amusing.) My caseworkers will also amazed at my children's FAS diagnosis, and they are incredibly uneducated on RAD. The system refuses to acknowledge these issues. It is just such an outrage. I am looking forward to the day I can go back to work, perhaps when the kids are grown and out of the house, and sue, sue, SUE the living daylights out of DCFS. Things have to change, and no one knows that like foster parents. We so, so understand.

I too understand. My daughter has all the signs of FAS, except we can't confirm that her birthmom drank, therefore we can't get a definitive diagnosis. My daughter's case worker has sworn up and down that her birthmom didn't drink "not even one drop". Now tell me - how can she say that with certainty. Was she there at the time???? Anyway, I applaud your tenacity at figuring out the needs of your children. Its quite a battle. And it shouldn't be. Ugggg....... Let us know the outcome of the evaluation.

Hello everyone! I feel like I am writing the 'next' (or should I say 'last') installment of the FAS Saga... (for some reason, Star Wars music comes to mind, but then again, George Lucas I am not!) Sorry it has taken me about a week or so to get back. I was so overloaded with information (not to mention more medical appointments, a four year old acting out, a still sick husband, and TPR right around the corner) but I degress... We had the FAS examination. Marie Heys (in Ann Arbor - FAS Diagnosis Clinic/U of M ) was a wonderful lady, and really helped us come to understand things. The two year old has ALL the classic signs of FAS. However, there were two things that held him back from having the diagnosis of full-blown FAS. 1) Facial features: He has the small brain, the no filstrum, the class 5 no upper lip, small jaws...yet his eyes were average size. 2) His body weight was in the 21% for his age. He had the 'hockey stick' palms, and the crossed fingers, and the lack of muscle tone...yet they could not prove that all that was caused by alcohol, because of his 'malnutrition' when he came to us 18 months ago. 3) He is behind developmentally. The sleep disorder is normal to FAS. His nurological system has been compromised (though again, they can not tell for sure if it was because of alcohol or the malnutrition)so they are not too sure what to make of the small 'sezures' that come and go. (so his mother either screwed him over by drinking or trying to starve him - I guess that was uncalled for, but I am rather fustrated.) His 'offical' classification is : STATIC eNCEPHALOPATHY, 'alcohol exposed', NON- PROGRESSIVE BRAIN DAMAGE. (I guess only 2% of the children who come in get A FAS diagnosis). They are recommending speech therapy, occupational therapy, and eating therapy. From what I have read in the books and tapes Ms Heys gave me, (and by talking with her) I have my work cut out with him. The non progressive brain damage means that it won't get worse, but it won't get better. Quite possible, down the road he will be diagnoised with ADHD. He will have learning disabilities. His chronological age will not bear witness to the stages of his development. Last Thursday, we had a 24 hour EEG done on him, to see if they can trace anything reguarding the sezuires. Of course, as luck would have it, he had no spells during that time. We are to find out the results in a week or so. I am glad we had the FAS testing done. At least I know where we stand, and what we are up against. I only got a few grunts from the caseworker :p Thank you all who held my hand and let me go on during this whole period! I do not know what I would have done without you all! You are terriffic!

It sounds like you had a very thorough evaluation done by competent people who took the time to really educate you. Now, you can educate me. What are hockey stick hands? And the crossed fingers? Also, what about the seizures? My daughter takes tegretol to prevent seizures, which they thought might be due to head trauma, but reading your post, maybe it's FAS? (I am with you here, too--is is because you smacked my daughter's head, hard, or because you drank during your pregnancy? Great alternatives, there.) I'm amazed at how strict some of these centers are on giving an FAS diagnosis. We got an FAS diagnosis with no "proof" of drinking--I didn't know she was a drinker, just that she was a crack user. Our main signs were small size, small head circumference, thin lips. My daughter has epicanthal folds--my sister thought she was part Asian, for example. She also has poor muscle tone. My son has ears that are a bit low. Both have odd fingernails. Both have memory problems with learning. It's nice to be able to discuss this with people who understand this is serious stuff, but at the same time do not just scream in horror. My kids are pretty great. Far easier than my attachment disordered child, who doesn't have FAS. (Not that they are without attachment issues, but not so severe.) Good luck with the termination. If you all learn new stuff about FAS, I'd be interested to hear it.

Hi Tybeemarie, I understand what you mean - being able to talk to people who understand what you are going through (and not gaze over in mid sentence!) The cross fingers look like (and this is my own description - devoted science fiction fan that I am) a cross between the "nanoo-nanoo" hand shake from the old televison series "Mork and Mindy" or sorta like the Vulcan salute ("Live Long and Prosper") Mr. Spock does on classic Star Trek - with the four fingers spread in a "V" (two on each side). Yet unlike Mr. Spock, the FAS fingers are 'crossed'. (And just for grins, giggles and for trivia sake, the 'Vulcan salute' has it's roots from the blessing gesture rabbi's do.) When my foster son does this (which is alot - but not all the time) he has to stop, uncross his fingers to pick things up. He also tends to point at things like this. The 'hockey stick' thing is (and this is gonna be kinda hard for me to explain) when you look at the palm of their hands, there are the 'normal lines' (you know, like what palm readers use). In some FAS children, there is a figmentation that kinda stands out in that top line, like a 'hockey stick'. (No 'rounded corner, but kinda 'squares' up and out at the end), hence - the shape of a hockey stick. I can't really see it, but my wonderful husband (ever the logical minded and sports fanatic) picked it out when Ms. Heys and the doctor pointed to it. One of the places I have found TONS of support and Fetal Alcohol Spectrum information is at: FaSAFASD@yahoogroups.com It is an Michigan based support group, but I highly recommend going into the files and the links areas. These ladies really have it going, and have their act together with FAS information. The best thing is, they are more than willing to share their experiances and information! Definately a place to check out, whether you are from Michigan or not! On my foster sons medical diagnosis, try Teresa Kellerman's website: [url]www.come-over.to/FAS[/url] You'll find some downloadable pamphlets including one with the title Static Encephalopathy. Her website is excellent.

Thanks all for those of you who replied about what the diagnosis would qualify your child for, it helps to know what type of services we may be looking at other than the school/education related ones I know about from my time teaching. Now I just have to wait until the test in July (well, I'm suppossed to get a nutritional eval and we have an orthopedic appt. in June for his legs but the geneticist specifically for FAS is July) God bless you allS

Hi Sandee C, Good Luck with all your testing this summer! The best thing that helped us out was FINIALLY getting a diagnosis - not for the sake of a 'lable' (I hate using lables on children), yet to look at the situation, being able to identify the problem, and adjust my attitude..."OK, this is 'what is normal' for my foster son. I can work with it." Alternative parenting does have its place in the fetal alcohol spectrum. Taking an proactive (instead of a reactive) approach to his special needs has already headed off a ton of fustration on both of our parts. Has it been easy? No. We are still arguing with the caseworker and the maternial biological family, as they are not taking this diagnosis seriously. (This bothers me greatly, because my foster son has responded so well with the alternative approach. If he should go back to family who refuse to accept his problem, he will be a lost cause.) I know many foster parents feel this way, reguardless of what medical diagnosis is given. It is something we have to deal with and go on. We have also noticed that well meaning friends and family have somewhat of a stand-offish attitude at times, wither thinking that we are 'babying' him or being too stirct with structure and routine. Offering education on the subject has helped with some people. Usually the ones who don't have pride issues or have children with a problem 'that they just can't put a finger on', tend to be more receptive learning about FAS. Again, much luck to you. The more you learn, the better prepared you will feel. Once you feel more educated, you will be able to handle the problems that come with FAS with more ease. And you won't feel like you are at the bottom of a dark pit with no hope.