Emotional Night - Long

CaptainSerious

This is really more of a vent, because I can't speak of any of this to anyone in real life except my husband, and he's dealing with his own emotions tied to all of this right now, too, so I don't want to burden him.  No one here has to read it; I just need to get it out.  I think, for the first time in my life, I really might want to seek individual therapy, because I process things by talking about them, and we aren't telling anyone in our real lives about the possible FASD, because we 1) don't want it to get back to M so he doesn't just give up entirely; and 2) don't want him being judged and immediately counted out by others, as incapable of achieving.

My parents have been staying with us this week to help out with the boys while our nanny is on vacation.  Last night, they were working with M on his homework, but couldn't understand why he was having such trouble with his math, even though they know he has a learning disability and we've explained to them a million times that he just doesn't get basic math concepts.  Apparently, my husband (who was working from home) heard my mother even say, "Come on, this is easy!" in her exasperation.  That's when he came downstairs and defused the situation, because he could tell that M was getting frustrated and giving up.

My husband called and told me this while I was driving home, and when I got in, I reviewed M's homework as usual, only to find that he just wrote down anything for most of the rest of his math homework.  My parents, who were supposedly working with him, never noticed.  I talked to them, and explained, again, that M wasn't just stonewalling because he didn't want to work, but that he has a learning disability and just doesn't get it, and why telling him that something he's struggling with is easy will only make him feel stupid and give up.

Realizing that my parents will never get it (I already had previously gotten the impression that they just think we don't spend enough time working individually with him and finding a way to get through to him), I broke down, and told them that we thing M has FASD, even though I know that we said we weren't going to tell anyone (at least not yet, and if we ever did, we'd be highly selective).  I explained that, if we are correct, this means that his brain is not formed the same as most people's and that this is not curable.  M will likely always have to deal with some symptoms and difficulties throughout his life, and the educational and social gaps we are seeing will likely get larger, not smaller, no matter how many interventions we pursue.

I then went overboard on how important strict confidentiality is in this matter, because my mother always tells, "just one or two people" who "don't talk," "don't know anyone," or "are family."  She got highly offended, and went on to swear that she never betrays a confidence, and started welling up with tears.

We took some time apart as I ate dinner and worked on J's homework.  Then, due to some cruel coincidence of date, I had to sit through an hour and a half webinar I had previously signed up for about FASD.  It was brutal.  I felt like puking halfway through.  At least the end had some positive notes about therapies and parenting techniques that seem to help manage the lives of children with FASD and their families.

I returned to the living room to apologize to my mother for hurting her feelings, but expressed why this was so important.  She admitted to telling some of M's sensitive, private information to my SIL, but insisted that she doesn't know why this isn't okay, since "she's family." My mother knows that I'm not close with my SIL, but told me that I should be and that I need to give her a chance, and let go of whatever silly reasons I have for not liking her.  I finally broke down again, and explained that the main reason that I don't like SIL is because she has said some awful things about adoption, and even compared my children to cattle raised for food (long story, which I explained for the first time to my parents).  I hadn't told them any of this, because it was between us, and I didn't feel the need to bad mouth her, just to distance myself.  My parents finally seemed to understand why I might not want to share intimate details with her or have a close relationship, but the evening wasn't over.

For at least another hour, my father tried to convince me that everything would be okay, because of our love for M.  M won't exhibit any of the characteristics adolescents with FASD are at high risk for--delinquent behavior, early sexual experimentation, depression, alcoholism, drug use--because we love him!  Why didn't I think of that?!?  All those other kids in the studies, they must just not have been loved!  When I kept trying to explain all the reasons that is nonsense, and how we have to educate ourselves on the best parenting techniques for children with FASD and be ever-vigilant throughout M's life, my father went on to tell me that I was focusing on the "dark side," "freaking out," and making myself crazy.  When I explained all the reasons that no amount of modeling and good parenting can ever correct the fact that his brain, if we are correct, has some significant differences which can impede the understanding of social cues and limit impulse control, I was told I was buying into the horror stories that physicians use to perpetuate their business.  It took me all night to convince my father that this is a significant health issue that physically affects the brain's ability to function in a "normal" manner, and that I was not being all doom and gloom about it, but just realistic.  It took even longer for them to understand that the reason I was telling them all this is because we need them to understand why M may never be able to interact the way they expect or reach the standards they think are "easy," as they are a major part of his life, and not that I was focusing on all the things M "won't be able to do."

Aurgh! By the time I went to bed, I felt like they understood more of what's really going on, but it was just such a miserable way to spend the night.  And, knowing my mother's inability to keep a secret, I'm already second-guessing my decision to tell them.  My husband isn't thrilled I opened that bag, especially since we discussed not saying a word until we were sure.  I was just so angry at how they handled homework with him, knowing that we've been struggling for two years and telling them, over and over again, how M has difficulties learning and virtually no working memory.  I understand it's hard for them to understand how bad it is, because M is really bright in all commonsense and technical ways, but it's like they must just assume we're exaggerating everything.  Believe me, I wish I was!

If anyone read this whole thing, wow!  I just really needed to get it out.  I am feeling crappy, and just want to cry, and spent my whole drive into work this morning wondering who should know, and when, and why--right down to M.  I think it's important for M to know at some point in the next few years; my husband things it's a secret we take to the grave unless he figures it out and asks us directly.  But those are questions for another day.  We don't even know M has it for sure, so I know it sounds like I'm putting the cart before the horse.

I've actually been doing really good lately, and just enjoying life.  Everything I said in my post a couple weeks ago about accepting that this is right for us is true.  I am not upset at the prospect that M may have it, no longer mourning the possible loss of what might have been.  My upset now comes from how to handle and address it appropriately without telling the world.  As he ages, his differences will likely become more noticeable; how do we get people to understand that it's a mental/brain/medical issue without telling them what he has?  I really don't want M to be treated as "the slow kid," and I think that kind of typing goes away when people can understand that there's a medical issue causing the behavior/social differences.  So that's what I'm working through now.

Rachel Sonnier

So sorry you had such an awful night :-(

You guys are in my thoughts and prayers. I hope things get better. I will also say a special prayer that your mom keeps her lips zipped, and that both of your parents can have the kind of understanding of M's situation that you are looking for. ((hugs)) 

Dr.Loretta

I read it all, and I want to send you e-HUGS.

Just a very narrowly focused comment about the math thing. It's not just your parents, and it's not just M's situation. I am not strong in math, and my father is a math whiz. I remember nights I'd be in tears and he'd be telling me that my basic algebra is "so easy", and couldn't understand why I didn't get it. This is between 2 people with no brain formation issues, just looking at things very differently. It seems this may be where your parents are right now. I'm sure now, looking back, my dad may have done things differently if he really thought about it.

As for the rest of it, it's tough. I'm sure you don't want to spend your life announcing, "He has FASD" to try and explain his situation, but you also want people to understand that they need to adjust their expectations for him. I hope that you will be able to navigate through this to come to a place where you can manage it optimally.

mommytoconnor

I'm sending you hugs.  I can totally understand.  I adopted a child from foster care and he has sensory processing, which is different from FAS, but he also has struggles with things.  He is also 2 to add to the stress.  It's not easy,  I don't know what my son's future holds, but just love him and keep your chin up. I also don't like telling a lot of people about my son, it's kinda on a need to know basis. I want him treated normal by others and I will deal with his special needs.  It's a hard balance.  Just know others are in the same boat as you.  Hugs mama.

ellekae

I read the whole thing too. So sorry you had that kind of evening! I can't imagine what you guys are dealing with! Please know that you are in our prayers.

As for whether or not you tell M, I think that is something that you could talk to a therapist about. Depending on M's personality, it may actually be helpful to him, when he is older, to understand that his learning difficulties have a specific cause. That way he won't think that he is just "stupid" or "slow." But you know best; you're his parents.

I do think it would be helpful to talk to a counselor. I also process things by talking, and going to a counselor can be a great release for people like us. When parents are raising children with disabilities, the stress on your marriage is huge; it may be helpful for your husband to come with you to counseling. Even if he doesn't say a word, it may be helpful for him to hear what you are thinking and what the counselor says to you in response.

Hope your family can get it together to be supportive and understanding!

Foster1Mom

(((HUG)))

Sometimes people just want to hope so much that the child is fine and they can love them through it. I think your parents come from a good place but they just do not get it. Give them some time to process things and maybe get them some literature on FAS. I agree with seeing a therapist. You need an outlet, you need someone to bounce things off of in a safe environment.  You are doing a great job loving and being an activate for both of your boys! Hang in there and vent to us anytime you need too.

DaisyZH

(( Hugs )) I'm so sorry that you had such a rough night.  I would be livid with my mother for not keeping my confidences, especially speaking to SIL.  To me that's way worse to tell family because they see and deal with you frequently versus a friend of your mom's or co-worker.  Not that that's okay, but to say that it's okay because it's family would really make me mad especially considering your SIL's comments.

IRR

Dr.Loretta:

I read it all, and I want to send you e-HUGS.

Me too!  (((HUGS))) 

SoSweet06

  I wrote you a long reply, but I couldn't find the right words.

  I think it's hard to see clearly when you feel overwhelmed. I completely panicked when we realized my son had all the symptoms what they use to call FAE (most of the behaviors without the facial features), so I will not say "calm down." 

   I will say, you know it is likely that M was exposed to alcohol. Beyond that initial exposure, unless an MRI shows you structural differences (which, it most likely won't...kiddo is having one next month, but we have been told not to expect to see anything), that is really *all* that you know about M's potential. I think I said it before, but I think the stigma of FASD outweighs the benefits of people "knowing why." In my experience, knowing the "why's" doesn't make most people any more understanding--just more opinionated.

  I'm reading Fantastic Antone Succeeds right now, which is much less doom and gloom as many of the other books, while still being realistic. If you haven't checked it out, it might be worth reading.

kipnus

I'm so sorry you had to go through that ordeal. I hope that you can find someone else safe to confide in, who can help you work through the issues with your parents and telling/not telling other people about the FASD.

septemberdreams

I'm sorry you're struggling.  I also continue to struggle b/c it's highly likely my DS has FASD.  We did have an MRI and the MRI did show a possible abnormality which can lead to a lot of FASD behavoirs and processing issues.  One thing we are trying to do as parents is to push him to reach his abilities.  I've been told that sometimes these children are just given up on because others think they can't do things meaning they've lowered their expectations too much. 

erinmc1

Ugh.  What a miserable evening.  I'm so sorry.  It seems like your parents are going to need some time to process what you've had a couple years to think about and accept the potential negatives.  So they're downplaying the possible bad to come.  I'm sure they don't want to accept that their grandchild has differences in his brain that they might never understand, so they're going to be as optimistic as possible.  

Maybe give them some materials so they can educate themselves and be prepared for how to best handle M's frustration with what they consider "easy" tasks.  If they understand more about FASD and don't think it's all just propaganda, they might be more realistic, and more sympathetic.  

I hope your mom doesn't spill the beans.  That's a very sensitive and private matter, and no one outside your nuclear family should feel they have the right to share.