Fetal Alcohol Syndrome

CaptainSerious

I hate to clutter this board with these questions, but those of you whom have chimed in here before on the special ed stuff have been really helpful.  Someone please tell me if you'd like me to stop posting these here.

Does anyone know if having a FAS or FASD diagnosis might hurt in terms of receiving services?

I ask this because it is highly likely that M has FAS, but he hasn't been diagnosed with it.  I've never pursued it because, to me, it didn't really matter, as long as we were treating his symptoms.

Recently, though, a special education advocate asked me if it was possible he had it, based on his symptoms.  She mentioned that it can be retroactively diagnosed, but urged caution, because in some cases, it can hurt us as much as help us with regard to getting him the services he needs.  She implied that sometimes child study team members/educational professionals may make the assumption that his potential is capped/limited, and therefore they might not work as hard to accommodate him/help him succeed/close the gap.

Now I'm wondering if we should pursue this and have him seen for a potential diagnosis or not.  Has anyone here noticed that having the diagnosis results in less help from the schools?

elissaann26

I don't know answers to any of your questions.  Nor do I have any helpful advice, except for keep on Mama Bear!

But I do want to say that despite my lack of understanding/knowledge/experience in this area, I am happy that you are sharing your journey on this board.  It is part of the adoption process.  Maybe not part of every adoption process, but it is definitely part of the process for some.  Thanks for giving us insight into everything you have done and all of the avenues that you have explored!

kmkaull2

Haven't noticed it, but what's the point of adding another label?  He has already qualified and a FAS diagnosis is unlikely to change the services he receives.  It is probably interesting and helpful information for teachers to have, but it probably serves no purpose to make it official as far as school services go. 

Mrs.Slick

My district does not tell teachers the diagnosis usually. We know their accommodations (and modifications if applicable) and that's usually it. We usually figure things out one way or another though either through ARDs, parent communication or the kid straight up telling me their dx. 

 Your child would still be eligible for all services and I think it's ridiculous that it would change the way a teacher would treat the child (not doubting that this happens - just that it's ridiculous). I've had children in full mainstream settings that are labeled as having varying levels of MR and they still had the same expectations from me as before I knew their dx. 

 ::steps off soapbox::

 

If it could help your family and help in his educational settings, then yes I would pursue it. If not, I'm not sure what I would do to be honest.  

mommytoconnor

In my experience, it will help him to get services he needs.  No expert should ever "cap" a child's potential based on a "possible" diagnosis.  If they do then get new professionals.  Each and every child is different and some with special needs will exceed expectations.  My son has some special needs and he is doing amazing and great things.

SoSweet06

 We are choosing not to pursue this diagnosis for our son. After talking with the neurologist, pdoc, and local MRDD...there really is no benefit other than your own personal knowledge. A diagnosis of FAS alone does not help with obtaining services. The corresponding IQ, health problems, and deficits in adaptive living skills are what qualify a child or adult for services. 

  Since our son is impacted more in the areas of processing/behavior with more mild IQ deficits, the diagnosis would do nothing for him. However, we are both educators (working in special education). While a diagnosis SHOULDN'T lead educators to feel a child's potential is limited, I have seen it first hand. I have also seen it first hand with a pediatrician who wouldn't think outside the box for behavioral solutions due to the potential diagnosis. 

   We did consider having our kiddo looked at more closely for a diagnosis because I thought it might help us have realistic expectations and remember that sometimes his behavior is a symptom. BUT, if we had continued with that line of thought, I'm not sure he would have made the amazing progress he has made in those areas because we've treated him as if he is "typical."

DaisyZH

elissaann26:

I don't know answers to any of your questions.  Nor do I have any helpful advice, except for keep on Mama Bear!

But I do want to say that despite my lack of understanding/knowledge/experience in this area, I am happy that you are sharing your journey on this board.  It is part of the adoption process.  Maybe not part of every adoption process, but it is definitely part of the process for some.  Thanks for giving us insight into everything you have done and all of the avenues that you have explored!

Agree completely

CaptainSerious

Thanks, everyone, for your responses.  I'm not really worried about the teacher's limiting the help they provide, but that the child study team would say he's no longer eligible for services, or as many services as he's currently getting.

I was warned that pursuing the diagnosis could be a double-edged sword, and Auntie's response in this thread kind of expounds on that:  https://community.thebump.com/cs/ks/forums/69245498/ShowThread.aspx#69245498.

I think we might find out for our own purposes, medically, but keep that information private from the schools.  Is there any reason this could backfire or be a bad idea?