Thursday, April 27, 2017

No One Else's Time Line

She sits on the couch, tears streaming, fingers wound tightly around mine as we get very, very real.  It has been a difficult couple of months, well, difficult is too weak a word to use, but repeating "challenging" over and over again as it pertains to broken brains grows wearisome, and it loses its potency.

The realization has settled in among the entire family that we have another FASD'er among us, a child whose brain was damaged by alcohol use in utero who has very little choice about how she is functioning at the moment.  Independently, every one of her siblings has privately asked the question of me, "Is Olesya ok?" and I have replied, "No, something is really not working right and we all really know what it is, don't we?", only to hear a sad sigh in response, accompanied by a knowing nod.

The only one who didn't really see it for what it really is was Olesya.

Just as it was for Kenny, the 17th year of life has been a killer in many ways.  For Kenny, brain malfunctions were constant, as were total shut downs in a way that are impossible to describe.  In Olesya it has manifested in a further breakdown of logic, as she has said many things over the past several weeks that left us scratching our heads, trying to figure out what in the world she was talking about.  She has started to make statements and then drawn a complete blank and been unable to finish them.  Math skills, which were poor before, are almost non-existent...she couldn't do a simple math problem like 2000 minus 400 without paper and pen, and even then she got the answer incorrect twice.

Worse yet, my sweet daughter who had struggled so much throughout the past 7 years to gain confidence and a sense of self was beginning to regress, and "No, I don't want to try." was becoming a new mantra.  Where a growth mindset had gradually developed, we were now seeing a pulling inward that bothered me far more than any math malfunctions.  Years of work appeared to be suddenly wiped away, and one night I began to do a little math work of my own, and putting two and two together, emotional arithmetic answers were revealed to me, and my gut told me it was time for a serious talk.

Two days after a particularly frustrating shopping trip for a few new blouses for her, during which "No" was resoundingly offered at every possible suggestion made by either Angela or myself, Dominick and I sat down alone with Olesya.  Though we had talked in generalizations with the girls in the past about the likelihood of them being affected by their mom's alcohol use, we had no evidence of it being used while she was pregnant, though definite solid knowledge of use very early in their lives.  Facial features are present for both, more strongly in Olesya, and the sort of "disconnects" we deal with on a daily basis with both of them made it obvious to us that we had more than one FASD child in the family, though not diagnosis-worthy as we already "knew" and they were far more functional than Kenny is.  Angela is the least impacted, but reflects it in frequent memory issues where information is totally lost, even if it has been shared  hundreds of times.  Thankfully, it doesn't happen often.  She too struggles mightily with math, and Algebra is truly beyond her.  She has the occasional disconnected moment, but they are not regularly occurring and her processing speed is rapid.

Olesya, on the other hand, has far fewer memory issues, but the disconnects are a daily occurrence, the immaturity gap (Dysmaturity) is far greater, and critical thinking is hindered on a regular basis.  Her processing speed is far slower, in other words, she has knowledge and can come up with answers, but it is more difficult for her to access the information.  This is often not as noticeable to others because it hides beneath a cloak of introversion, but I know her well enough to tell the difference, and can always see when she is slow to respond because her brain is working harder.

My light bulb moment arrived when I realized that Olesya was hiding from her increase in disabling behavior, she was "stuck" and needed someone to name it, and help her claim it.  I don't care for labels, but I have learned through the years of working with our kids that labels can be incredibly helpful if it offers someone an explanation of "why" things don't work the same for them as others.  I suspected that Olesya was hiding from her "why" right now, and was confused, scared, and lonely in it.

She needed it named clearly, she needed to accept that what we are seeing and experiencing with her is true disability.

We started the conversation, Dominick present but quietly observing and allowing me to lead.  I asked her if she had any thoughts about why the past couple of months had been so hard.  There was a little bristling, a little verbal avoidance but an acknowledgement that things hadn't been going very well.   After a few minutes of dancing around and drawing her out a little, I stated clearly and firmly that I didn't know if she saw it the same way we were seeing it, but that she was experiencing classic signs of an adolescent with FASD, and we wanted her to know we understood she wasn't doing anything in purpose, but that she had a true disability...and I wondered aloud if she realized that.

That was all it took.

Dissolving into tears, we proceeded to be very real, very honest, and very raw.  We talked about the "misfires" she had been having lately, she admitted she had been anxious and nervous because she had discovered on her own that she had left the flame on the stove five different times over the past few weeks, and things weren't making sense in her head at all a lot of the time.  I gently explained that this age was harder for kids like her, and I kept repeating words like "disability", "fetal alcohol", and "handicapped" as I explained that she couldn't fight her brain and none of this was her fault.

"Do you realize you really and truly do have Fetal Alcohol Syndrome?", I asked, catching her off guard.

"No, I really didn't even though we talked about it before.  I wasn't as bad as Kenny, so I didn't think I did.  Now that we are talking and because of the past few weeks, I really do think I do." she said, choking back the disappointment and fear.  Coming to acceptance can be a painful, painful road to we have had to walk far too many times with our children.

Olesya then spoke herself and brought up driving, which we had planned on working on this summer.  She explained she was truly scared of it, wasn't sure she would ever be able to be safe because it took her so long to process information and she realized she needed to be able to respond quickly behind the wheel.  Seeing the dismay in her eyes, knowing she understood full well what this might mean for her future if she indeed really couldn't drive, I wanted more than anything to just make it all go away, to fix all that isn't working right.

How many times through the past 20 years have I wanted to carry all the pain for my beloved ones?

I was so proud of Olesya as she also spoke honestly and forthrightly about how our gingerly approached conversations about future thinking and possible career training were scaring her, and she admitted she doesn't feel at all ready to think that way, that she felt more like 13 or 14, not at all like a 17 year old who really should be wanting to think about her future.  "It scares me, mom, and I don't even know what I like, or what I can do, or if I can ever even support myself if my brain is like this."

Reality is hard to contradict.

Dominick and I have talked for awhile about our concerns for Olesya.  While we have no worries about her being a productive employee who works full time, does she have the capacity to work at a job that allows her to earn anything beyond minimum wage?  She has MANY gifts and talents, particularly when it comes to organizing, and she is bright and intelligent.  People don't always get that FASD isn't always IQ, it is the brain's inability to access or use that IQ in a fully functional way.  Her introversion is a big one for her to overcome, and her stuttering is growing a bit worse.  She seems to have poor tongue muscle control and often chokes on her own saliva randomly, which she spoke about in detail as it embarrasses her.  When she is nervous, she stutters a lot and struggles to get thoughts in order, causing her to slip to the background so it isn't noticed.

At this point, we asked Kenny and Angela to join us in conversation, both of whom had been asked prior if they would mind taking part in this particular discussion.  These three beautiful human beings have overcome so much, and have to work so hard every single day just to achieve what comes easily to others.  Kenny actually asked if he could be helpful in talking with Olesya, and he offered to explain how hard it was for him to accept his limitations and begin to start working with me as a team to move forward in his life versus denying it and hiding from it.  The talk I had with him prior to speaking with Olesya was an important one, and helped me focus on the things that might be most helpful.

There we sat, in the afternoon glow, having a conversation no parent should have to have with their 17 and 18 year old kids.  We reinforced that no one had to "grow up" at any pace other than that which was appropriate for each individual, and that FASD often means kids need far longer to mature and gain skills to move out into the world (often not until their late twenties).  We reiterated that not a single child was a "burden" to us, but instead never failed to delight us, to inspire us, and to instill in us a passion for helping them that would never, ever dissipate.  We claimed this home as theirs forever, just as it is for Josh and Matt should it need to be, but reminded them that in time, they would gain more confidence and they would know when (or in some cases, "if") it was time to move on in life.

There was so much love expressed in that moment, from parents to children, from siblings to siblings.  What could have felt hopeless was instead quite the opposite, it was an afternoon filled with authentic concern, safe exposure of fears, and a recognition that no one was alone in this.  Sweetly, each of the three expressed deep worry for me as their main caretaker, as they shared their gratitude for all I do to advocate for them, and for the work I do with them to help them understand and be understood.  It was the perfect opportunity for me to express my own gratitude for them, for how they accept correction from me, for how they work harder than anyone I know to overcome so much, and how we are a team...always, always a team

The truth is, as I explained, none of us caused this, it is not the fault of a single one of us, so we need to never fight against one another and view ourselves as a strong unit who will work against what outside forces caused.  All nodded in agreement.  I also shared how both Matt and Josh are concerned and had shared a lot with me recently about their siblings, and provided me with great insights as well...and that they, too, are on their own journey that at times has been quite difficult, so they "get it" too, even if this particular issue isn't one they struggle with.

We parted after an emotionally exhausting two and a half hours, with no secrets, new understandings, and a lot of fear aired.  Over the next several days, it became immediately apparent that the conversation and been a cathartic experience for Olesya, and her entire demeanor changed.  I asked her a few days later how she was feeling about our conversation, noting that she appeared to be lighter hearted and more herself.  With a smile she said that it had indeed helped, and she felt safer and more secure now, and that she realized she really did have a lot working against her but knew she had plenty of time to grow up and we would all figure things out together.

And that's really the point, isn't it?  That none of us are really alone unless we choose to be, and in our self-imposed isolation our problems are amplified by our inner voices.  Naming something, sharing it, unburdening ourselves of the fears, both real and imagined, is healing and draws us closer to those whose support can breath new life into our lives.

For now, we will take it one day at a time with each and every one of our burgeoning adults.  Some will need us longer than others, all will be there for one another.  We are on no one else's time line but our own.


Anonymous said...

Coming to the realization that your disability is real and is affecting you is a very difficult step to reach. I have fibromyalgia, which affects memory as well as daily bodily pain and other affects, and it took me a long time to come to grips with the fact that, as a woman in my 20s, I need to write down things that are important for me to remember, or they won't get done in the case of actions. I need to realize my pain and treat it through medication or exercise or other means. I need to realize I may not be able to eat whatever I want without digestive system issues. Coming to terms with the fact that you're different from others is a tough thing with which to grapple. I am glad that Olesya has such a fantastic family support system behind her and I know that she will find her place and purpose in the world, when the time comes. We all do things in our own time, in our own way.

Anonymous said...

Thanks so much for this post about Olesya. It makes me wonder about my own son, adopted from Kaz at 9 months, now almost 11, who has always been rather challenging but in subtle, hard to pin down ways. Your description of IQ v. the ability to access information is so very much like him. If he has FAS, it is on the mild side -- he doesn't have any of the physical signatures. I'm not sure if it could be positively diagnosed. But that almost doesn't matter. He is who he is. There is no magic bullet. Being armed with info that can help us help him and our often stressed family, however, does matter, and you've led me to a bunch of info I had not seen before -- whether or not he is FAS, much of what I am now reading about the teen years with FAS is stuff I'm very glad to have in my tool box. Seems highly relevant whether or not he is diagnosable. So thanks for this. And thanks for all your posts. You provide light and such a fantastic role model.