It's been a little over one year since we returned from Ethiopia with M3. Our family has been through quite a wringer in the last 12 months. We are bumping up against some hard truths and trying to make sense of lots of things that simply don't have answers. We are seeking clarity in waters more murky than one could imagine. We are looking for any shred of hope wherever we go, but finding none. And, the "last resort" move we thought we'd never have to make is scheduled for the afternoon of the 26th of this month.
We have no earthly idea what he will say, what we will say to him or what will be the end result and recommendation from this meeting. Too many variables to consider, not the least of which is our sheer exhaustion, frustration and all other negative emotions that come with fighting an uphill battle with every single person you come in contact with--no safe havens or rest for the weary.
We are torn between having a somewhat normal life for our older two children and avoiding all situations and people in the outside world who majorly influence our ability to parent M3. She has never had to "get real" with herself and her behavior because there is always somewhere to go that will allow her to walk outside the carefully crafted boundaries we have established in our home. This forces the boundaries at home to become even more restricted which makes her free-for-all boundaries outside the house feel even wider. It's a no-win situation for any of us.
We know that this is boiling down to a decision of absolutes. There can be no gray area. We have been in a gray area for months and it means we live as close to being hermits as possible and that when we venture out, we all pay for that by having to start over at ground less-than-zero with M3. Our home, following any excursion, is tense and not fun and no one wants to be there. We all suffer the consequences while M3 goes on blithely about her way--never really allowing the circumstances to sink in and make her feel anything other than safe enough to take all kinds of risks, but not safe enough to commit to a family relationship--or any relationship for that matter.
People have told me time and again that I shouldn't feel guilty and then follow it up by telling me if only I could do x, be more y or try z, this would be better.
I don't feel guilty. I, in the past, have felt a horrible amount of anger and frustration. Now, I've grown bitterly resigned and I can no longer muster the hysterical, frantic, pleading emotion I once had readily available. I'm simply too tired to keep trying. My husband and I know that we either have to change every single thing about my older daughters' lives (including but not limited to cutting ties with our extended family, avoiding social gatherings or splitting the family to attend them, limiting activities outside the home for financial and/or time constraint reasons, etc) or we will have to find an alternative arrangement for M3 so that she can be in an environment that fully respects her disorder full of people who will help her primary caregivers rather than frustrating their efforts at every single turn.
Here is the best scenario I can create to try and paint a picture of what it's like to be us, staring down this challenge alone:
In our family, there is a young boy who has three siblings. He is the only of his siblings who has a very serious allergy to certain foods, namely all things nuts. His food allergies were discovered in his very early childhood and his parents were extremely open about it, diligent in educating family members and their other kids, and continually vigilant about the things he was exposed to lest he come in contact with something on the danger list and suffer severe consequences.
The entire family honors those parents and their wishes. Potluck menus are danger food free. No one would ever dream of handing that child something to eat or hold in his bare hands if they weren't certain it was a safe food for him to handle. The entire family rallies around and keeps an eye so that his parents don't have to be on guard the entire time they are at a family gathering.
The parents do not constantly have to remind, ask, educate, beg, scream, cry or otherwise go off the deep end to have other family members on board. No one wants to see the little boy suffer or get sick or worse. So, they just do what needs to be done to keep him from having a violent physical reaction to his surroundings. Even his own siblings keep an eye and make sure that he doesn't come in contact with a food on the danger list.
It seems so easy because it is something "normal" and visible--no one has a problem with what the parents have asked. It is the "normal." Period.
Let's pretend M3 had this same food allergy rather than Reactive Attachment Disorder (and her any number of yet undiagnosed alphabet soup conditions), but that everyone in her environment has to maintain their current behavior in relation to our rules and requests dealing with RAD, but putting the allergy in the place of RAD.
Our time at a family gathering would look like this:
We would have informed our family of M3's allergy. Educated them. Explained to them what it looks like, what will happen to her if we can't keep her well, that she may never get better but that living a more normal existence is possible and it's up to us to help her stay safe and learn how to be safe when no one is watching.
However, these requests and attempts at education fall on deaf ears. We are continuously told, "I bet if you fed her peanuts with a smile or while you were hugging her, if you just did it nicely, she wouldn't have an allergic reaction." Or, "We don't want to treat her any differently than the other kids, so we let her have a Reese's cup."
The gathering is full of all kinds of opportunities for M3 to come into contact with the things that will make her sicker. Instead of respecting our boundaries and helping us ensure she doesn't move too closely to those things, we're bombarded with guilt--"Can't she just go to where the kids are playing with mixed nuts and making a peanut collage?"; "Why does she have to sit right beside you? Why can't she come over here by the bowl of mixed nuts? I'm sure she'll be just fine."
The girls, when trying to remind M3 of rules or point out when others aren't following rules in relation to M3 hear, "You girls are so MEAN. This is your sister! Why are you trying to keep her from having peanuts?! You two should be ASHAMED of yourselves."
Instead of hearing, "No, M3. Your Mommy and Daddy said you are not supposed to have a peanut butter cookie", we hear, "Here you go, M3! Enjoy it!" with the hidden message of--"Your mom and dad are idiots, M3. You look fine to me! I bet they just like being mean to you and keeping you from all the joys peanut butter has to offer! Let ME give you the peanut butter. They don't know what they are doing and we all feel so sorry for you, you poor, poor little thing."
And what if we become convinced (as we have numerous times) that people actually have heard us and will listen and do understand? We become so convinced that we leave her alone in their care and then, just like a parent who comes home to find her child struggling to breathe and covered in hives, we come home to find out that, yet again, the boundaries have been crossed, M3 has been allowed to roam free and we pay for it for days--not in physical health disturbance but in mental/emotional disturbance.
M3 is not the same as other children. Period. And the bunk of "we just want to treat her like all the other kids" is ridiculous on its face. M3 has never been treated like all the other kids. She is treated as somehow special. One of our older girls can ask for a snack entirely too close to dinnertime and be denied it, but five seconds later M3 can ask and will be handed exactly what she asked for. And, where crossing the lines with our older girls as far as following rules to a "t" is not as important because, again, they don't have the same "allergy" so one stray peanut butter egg at Easter isn't going to harm them at all, it doesn't follow that to prove to M3 that you love her, she has to receive exactly the same thing. In fact, that proves the exact opposite.
I know for myself, as I love peanut butter more than I should, that I have felt a little sad for our little relative (or even M1's little brother who has very similar food issues) because the simple joy of a spoonful of peanut butter is dangerous to them. However, I understand his parents concerns. I share them. I would never want anything bad to happen to him. I help them watch; I pay attention. I do as they ask and nothing more or less.
What I would not give to have even half that buy-in from even half the people who deal with M3 on a semi-regular basis. I say semi-regular because outside our home, her teacher and therapist are the only ones who regularly see her. It's had to be that way for all of our sanity.
Our family dynamic is such that M3 will never be able to move about freely because there simply is no desire or ability on the parts of those outside our own house to do what we ask. Whether it's teachers, gym and swim coaches, Sunday School teachers, etc., no one needs to become an expert on RAD to respect parents' boundaries and rules where their children are concerned. Those we would rely on for support lack those boundaries and that basic respect, it seems. We ask and it doesn't happen. I don't think anyone does it to be spiteful; quite the contrary, I think people do it because they cannot see M3 for whom she really is and because, somehow, knowing my husband and I for our entire lives isn't enough to know when we mean business. She is a very, truly sick little girl who has experienced such devastating trauma that she is allergic to affection. She won't break into hives or stop breathing, but she will spiral further and further away from a place where she could become better. That's the rub for us. We've explained it until we're blue in the face and no one listens.
So, no. If we have to make the devastatingly difficult decision to find M3 another place to live, I will not put a yoke of all the guilt on my neck without sharing that load with several others. We did not do these horrible things to M3 that have devastated her development. We have done everything within our power to turn that devastation around--all by ourselves. My husband and I simply cannot do this alone. And yet, if we remain status quo, that is exactly what we will be doing. It is even more infuriating when people say, "Well, you know, it definitely looks like you need help. All you have to do is ask." And, as you glance down, you realize these people are covered entirely in peanut butter.
My husband and I aren't blaming anyone, though--please don't think that. We know we're in over our heads and we live with this every day. It's just hard to be drowning and not have anyone on the shore wading in and willing to hold you up while you catch your breath.
M3 is a master at triangulation. Many people have fallen into her web on that tip. Her teacher had to be rescued from the web by several back-to-back uncomfortable incidents where, finally, M3 stole something from another child's backpack and then the principal became involved. But that happened in March...way too late to make any significant changes to her behavior at school. Of our family members, my father is likely the only one who consistently has M3's number. And. She knows it. You won't see her sidling up to her Papaw trying to figure out how to work her magic on him. Nope. He's not buying what she is selling and she has plenty of other customers so no need to even open her pack of wares. It's the same with some of our friends--who, mercifully, understand us, hear us and respect our wishes even when it "kills" them to do so. One of my best friends would love to hug and love on M3 constantly, but knows that is not good for her at this stage in her treatment. M3 does not seek or accept affection from her parents--she isn't supposed to be sharing affection willy nilly with everyone else.
All someone has to do is say the magic words, "Your Mom and Dad said..." or "I'll have to ask your Mom and Dad..." and the gleam leaves her eye. She knows she's been had. It's an easier process than one might imagine. Unfortunately, she hasn't received that answer more than once or twice in the past year--so she can keep working the system and keeping her distance from her parents and siblings.
I'm not sure what else to say or do or write.
That is where we find ourselves.
Adrift. On a sea of peanut butter.