Grief comes in waves, much like dawning awareness. The past few weeks have been so very hard, and I have been trying to share but haven't seemed to be able to. Sometimes you have to just sit with "it", whatever your "it" happens to be. Then, sometimes you have to purge, to allow the gremlins loose so your head doesn't explode. I am forcing myself to sit at the keyboard today, for writing has always been the way for me to clear the fog, to find release, and on a few very lucky days, to gain inspiration.
I want to make it absolutely clear that I am sharing with explicit permission from Angela, who understands that in many ways, our family is blazing a trail for those who adopted children younger than her, and who need to feel less alone. I have spoken with literally hundreds...if not thousands of adoptive families through the years, and I have heard over and over again how our sharing has helped them get a diagnosis, better understand a situation, or parent their child better because they have learned from our mistakes and our successes.
This will not be eloquent, for I am far too tired, far too overwhelmed, and far too despairing to care much about literary devices. I can't seem to stop the tears from falling, new waves themselves.
For the past several days I have held Angela in my arms over and over again, as she has sobbed, trying to make sense of a brain that she thought performed far better than it does. Denial is a powerful tool for coping, but eventually the wisest among us (and trust me, this girl is far wiser than most) let go of clinging so tightly to that protective wrap because they know it is just a ruse.
For years, Angie has lived with the illusion that many of us did as well, that she was the least impacted by Fetal Alcohol Spectrum Disorder (FASD). In comparison to Kenny and Olesya, who she could clearly see struggled in all kinds of ways, she admitted to feeling I had sort of lumped them all together and that, in fact, she really didn't have it at all.
She didn't see what I saw, what any of us saw, and her higher than normal emotional intelligence offered her the chance to masquerade as undamaged, though her struggle with logic and memory from time to time slightly lifted the mask. As her educator, over and over I saw signs that concerned me.
Several things this past month have brought Angie to a place of painful realization, that she indeed has far more challenges than she had imagined. When your academic environment has been fully adapted so you can learn as well as possible, and when you have English Language Learning in the mix, it is easy to dismiss the daily hiccups you experience...you have no real basis for comparison because some of your siblings also struggle, and sometimes in more obvious ways than you do.
Many might accuse me of overprotecting her, but what those who are ignorant of the facts about FASD don't understand is that this never gets better and most kids with FASD struggle to learn well at all. This isn't about making it too easy, it is about making it possible to learn at all. And learn they have!! When taught in the ways the FASD brain needs, remarkable progress can be made. Visual supports, small bite sized chunks of information, recognizing that traditional textbooks will never, ever work, using the Socratic method to embed information and help develop logic, repetition to a maddening degree, and much more has made all the difference. You can't over-protect brain damage, you simply have to accommodate it as best you can, and try for gains in all the areas where there are strengths.
And you can't over-protect poor decision making skills, slow processing speed, and random memory loss. The data is stark and as our 3 FASD kids mature, we ALL see their need for far more protected environments. Angie learned how quickly her brain can trick her recently, and how even she could fall prey to really poor judgment. Thankfully, nothing happened, but it was a wake up call, not just for her, but for her entire family. There were test results from academic testing that were the first real shock for her that revealed in black and white how concretely her logic fails her on a regular basis, and that her confidence in her performance was misplaced. A couple of long tearful conversations with, yet again, more explanations about how the FASD brain works, or rather doesn't work as expected, and there was a crack in the veneer of denial that has been in place for years.
How I despise this! How I hate being the bearer of hard news repeatedly in my role as educator, and not just the mom sitting side by side receiving the news together, being the comforter and not the "bad guy". This daily dance between mom, special ed teacher, gifted ed teacher, therapist, advocate and encourager is so damned hard. Sometimes, more than anything, I want to be just Mom, and yet that really can't be because our kids literally can not survive, let alone thrive, in the public education system. And there are no local therapists who work with the unique combination of trauma, loss, PTSD (Oh yes, that is rearing its ugly head as well for Angie, and it is real and POWERFUL.), adoption, and Fetal Alcohol Spectrum Disorder. Heck, there are not real specialists we can find in the entire US (Trust me, I've tried). So, I end up shape shifting, almost hourly.
I sometimes wonder what average parenting is like. Parenting where you are not worrying about the next major surgery, or the next learning disability that might appear and push your kid over the line from possible independence to no independence.
The hardest part was yet to come, and though in degree it was unexpected, that it happened at all wasn't, at least for me. Angie has been working for a family friend visiting as a companion and occasional caretaker for their aging mother. She has been doing this for over a year, and enjoys it very much. In order to help this family pay for the care Ang was providing, they asked if she could become an employee of a local home health care agency, and in doing so Angela could also gain some valuable experience, go through an interview and training process, and take a real firm step into adulthood.
Day 1 of training was a little disconcerting, as it was a situation where a binder was thrown at her and she was told to read it, then take a test...no talking through material, no real interaction. The afternoon was better as she was shown how to properly move clients, etc. and it was all interactive and visual. She came home talking about it a lot, but underneath it all was some real anxiety I was seeing, and we talked a lot about Day 2 of training, which was yesterday and only a half day. She was exhausted from thinking so much and having to be on high alert, no doubt in part to hide some of what wasn't "clicking", but we all hoped the next day would be better, so off to bed early she went, and awoke with a positive attitude.
She got through Day 2, and when she arrived home, she was a little more subdued than usual, and those who know our Angie would immediately recognize that her light was dim...she brings sunshine wherever she goes. She sat down at the table with me, opening the training materials to share them with me, and within a mere couple of minutes, she looked up at me and with tears said, "I really do have a disability, I see it so clearly now." and then as she tried to hold it together she explained how the other woman who was training with her said it was the best job training she had ever had, and how lost Angie was throughout a lot of it. I tried to calm her down and we looked through her training materials to make a list of questions she could ask, and discovered she hadn't asked about or clarified even simple things...like how much per hour would she be earning. She was confused about her time sheets, terminology, and more. We added things to our list, but were interrupted by dinner, then continued the conversation afterward.
Oh, the heartache! I don't have words for what I felt, what we experienced together. She said she now understood just how much I had adapted things at home so she could learn, and she shared how very scared she was about her future. For many years as I have been trying to prepare the kids for post-high school, when I encountered blips with brains or obvious areas where a boss or supervisor would never rework things for them, I pointed it out and explained that bosses don't give you third and fourth chances to get things right, they don't follow you around and correct how you are doing something, it is a fast pace and you need to be taking in information accurately, and doing the work efficiently because the world isn't easy, nor is it kind.
She referred to all those years of my gentle preparation and she choked out, "Today I really saw what you have said, that real jobs and the real world are going to be very hard for me. I have really been in denial."
And this was training for one of the lower level jobs she could ever have, not even requiring CNA training. We talked about the reality facing her, our shared concerns, and about all that was hard. I asked her to help me be able to better equip her, and to help me make a list of what normally helps. She admitted she probably only truly retained about 15-20% of the information imparted, and already she had lost a lot from the day before. She realized immediately how differently we teach at home, and I emphasized that she CAN learn and IS smart, but her brain really requires a different pace, a visual presentation of information when possible and when not possible the chance to think about it and work with the information verbally in discussion in order to hang on to it. Even then, she loses information more frequently than someone with an average brain does.
I decided I needed to bluntly ask a question.
"Do you think we should stop this now? Is it too difficult? Will you be unsafe with others?"...and how hard that was to ask, knowing a "yes" would feel like defeat, and yet knowing that a "no" might lead to being fired quickly (she had already said they spoke often about all the infractions that would get her fired, some fairly minor) that might prove to be an irreparable blow to her self-esteem.
With a quivering chin and tears streaming she said, "Yes, I think I need to quit. I can't do this."
And in that moment, I ached more than I have in years and years, perhaps it compared only to the ache I felt leaving her and Olesya behind at the orphanage all those years ago when it looked as if their adoption was not going to happen, because Angela simply couldn't break down the emotional walls and trust a mom again. I held it together, and didn't cry much in front of her, but later after she went to bed, I couldn't stop the tears...thoughts kept rising, and fear at a very deep level returned.
You see, I have known this was going to be true for years, and in fact, since Kenny was about 10 years old Dominick and I have had conversation after conversation about whether he would ever truly be able to hold a real job and make it in the world. With no diagnosis to come for another 7 years, I have lived with a low level panic that arises now and then when brain function is almost non-existent, and that awful hollow feeling has only increased with the addition of the girls and our growing suspicions over the past 8 years of the impact alcohol in utero has had on them. My gut has screamed at me from time to time, and yet I have held out hope. "Maybe I am wrong, maybe I am over-exaggerating the effects, others see them as perfectly normal and doubt me all the time...and don't hesitate to make that doubt known. Maybe I am seeing something that isn't really there." And Angela was the one we had all thought had the best chance of really making it to a somewhat normal adult life, maybe slower, but a good chance.
And the very fear I have lived with can no longer be tamped down, I can no longer hold out hope of "normal" for my three beloved ones. I wasn't unrealistic, I was simply hoping against all odds that maybe...maybe...
All it took was the very first opportunity for the point to be made crystal clear, and all hope of "normal" flew out the window.
Watching her grieve is so very painful, and joining her in it as I also grieve is important. We are not hiding from it, we are not sugar coating it, and we are not fantasizing about it. This was the first real test, and as I explained to her, she didn't fail, we simply have new information to help her move forward.
But that matters little to a 20 year old beautiful, compassionate, BRIGHT young woman whose fear for her future is suddenly, palpably, very different than she had hoped it would be.
"I feel so lost."
"It is like I don't even know who I am. I need to find me."
Oh, sweet daughter of mine, how I wish you could be spared this, and yet how much I know you need to see yourself as you really are...and I don't mean just deficits but all your wonderful strengths.
Additionally, LOTS of mixed up feelings about a birth mom who is sort of missed, sort of blamed, sort of feeling present with us despite being far out of the picture is making it all more convoluted. This is not a straightforward process, and her birth mom was incredibly violent, further adding to the emotional soup right now.
Yes, we have a lot of work to do. No, no one would realize it when they are around Angela, because she is all this, and so, so much more. Others think that because our kids are 19 or 20, that we are past all this. Yes, I am affirming her hourly. No, we are not going to "try again" immediately. This is not a horse that has thrown her and she needs to get back on, this was the realization that the horse was really a car and she has no idea how to drive it. She needs time to process all that she has become aware of, she needs time to heal from the pain of realization and shedding denial, and she needs time to step back and be a younger version of herself a little while longer while she does the healing and oh-so-necessary work of becoming a new, tougher and yet more
And you know what? Even in this moment, God is with us, and in a less emotional but so sweet moment this afternoon while waiting for the boys to be done with their orthodontist appointment, we ran to McDonald's after she dropped off her work binder and materials and let them know she wouldn't be able to continue. We sat there, this resilient, hurting woman-child of mine, and reminisced, and shared, and spoke of truths. Unofficially, we gave thanks for all of these things:
1) That we have the relationship we have, that we can comfort and nurture one another through hard realities. That we turn to each other and trust one another completely and intimately.
2) That despite a slip up the past couple of weeks, her own personal wall has been torn down, and she can be her softer self...that it is safe, though from time to time she needs to be reminded of that.
3) That my own difficult growing up years have helped me parent differently, with great intention, and with insight I never would have had if things had been easy.
4) That God being in the midst of our family has literally saved us, over and over again. Families like ours aren't making it. Multiply FASD times three and the horror stories I could share would freak anyone out. Anger, violence, rage, sexual predatory behavior, drugs, alcohol, unwanted pregnancies, loss of relationship, and so much more are all things we have avoided by being educated about FASD and aware that we could create far more problems than we already have. Without God, without support from others, without calling ourselves back to one another with great regularity, we all know we will fall apart and our kids will statistically end up on the streets or dead. Not a single one of us disregards this now, and Angela fully saw how vulnerable she is. And she does have God to rely on, as does our family, and we can trust that though we can't see a way through, or futures are momentarily seemingly out of reach, we have lived as The Family God Built long enough to learn to trust that we don't have to make things happen every time, we simply need to say yes to every opportunity.
5) That she and I were meant to be mom and daughter. Period. And that her feelings about her birth mom have nothing to do with her feelings about me, and I can feel that to the core of my being, and she can feel safe and not hide anything from me about her confusion over that part of her past.
6) That we have others in our lives who care about us, even if sometimes they don't really understand or even see all we deal with, they care about us, are there for us, and would without question show up if we needed them. That alone is a gift of great goodness in our life.
7) That we can dream new dreams, that we can take what we know now and use gifts and talents to move forward in new ways. That we have the ability to work hard, love even harder, and improve anything. We can't fix it, but we can work with it.
8) I personally give thanks that, despite the mourning of an imagined life of less challenge, Angie "got it". We can't ever work with what is denied, and we are running out of time. This was going to happen one day or another, and I am so very glad it happened while sheltered in the arms of her loving family.
9) That our family is strong, resilient, connected, and blessed.
I won't lie here, I am scared in ways I never imagined being scared. Suspecting that your children may struggle to obtain and hold a job is far different than seeing it first hand. 80% of all adults with FASD are incapable of holding steady employment. That is now more a stark reality for us than ever before. I feel a sense of responsibility that is heavier by the minute, for there are absolutely no services in the US, there is no help, no advice, and relatively few adults who are stable with FASD to learn from. As usual, we are outliers, and Dear God I hope we remain it, for being an outlier in this situation means we are experiencing some success and my children are not dead, incarcerated, or on the streets.
I have no idea at all what we will do. This coming year is Kenny and Angela's senior year. The pressure is mounting to figure something out, but we are going to step back and regroup. I am going to make sure somehow my own well is not dry...because right now it is more than it has been in a very long time. But we are going to take it one day at a time, view trial and error not as failure but as information gathering to help us along the way, and I am going to do whatever possible to put my brain in overtime eventually to see what we kind of realistic plan for the future we can come up with.
Regardless of all we know, regardless of what our lives will never look like because we chose a different path, I wouldn't change a thing. Dominick and I each love our five with a passion that lights a fire in each of us to provide for them, and to help them live into meaningful futures well suited to each one. If someone had told me before Angie, Kenny and Lessie had come home that they would have FASD for certain and we would be parenting perhaps forever, I would still grab my suitcase and run as fast as I could to catch that plane overseas.
I would be a lesser human being without any of them, I have grown in ways I never imagined I would or even knew I needed to, and I simply can not fathom a life without them in it. Matthew and I have talked recently and he said much the same, that all of us are who we are in large part because we have each and every one of us.
And I like who Team LaJoy is.
As Angie and I said with a renewed sense of understanding today, my personal phrase for our family is ever more important:
Hard isn't bad, hard is just hard.
And with every tear shed, with every new challenge that arises, I know that hard never broke anyone, and we will make it. I may not have a clue how we will make it, but we will.
No comments:
Post a Comment