I have been pondering how to approach writing this post for several days, and even now as I sit to try and write for the third time I know I don't have it quite right, but it won't leave me so I will give it a shot, and apologize ahead of time if it is incoherent or plain old pointless. It is long, it is winding, it is heartfelt, and it needs to be written if only to reinforce things for myself.
This week was a profoundly important one for both Kenny and I. Our day long annual cleft lip and palate clinic was unremarkable as it pertained to Kenny's health, and the next surgery will be delayed a year as his orthodontic work needs to be further along. However, it was only afterward that we understood the real reason the two of us were alone for an extended period of time.
God had some work to do on our hearts and minds.
The past several months, we have sort of "lost" our deeper, more enthusiastic Kenny. At first Dominick and I attributed it to summer haze, and the lack of working his brain daily on school work. Over time, it became more clear that something more was going on. Since he turned18, I have tried to back off a bit more, to allow him space to mature and take on more of his own life. He has also been encouraged by us to advocate for himself, to explain to others that he has a disability and needs supports in place in the form of other people helping him, extra time to record things so he won't forget, etc. In other words, I have been doing the same thing in many ways as I have with Matt who is 8 months younger...letting him run his own life more, and stepping back.
Kenny, in turn, has pulled back a bit, trying to live into his 18 year old self while being far more aware than any other 18 year old young man ought to be of the gentle pressure his special needs place on my own shoulders. He recognizes that being his "second brain" is no easy task, and he wants to make it as easy as possible on me.
Wow...what a bust this has all been.
What has happened is we have a more disconnected son, both with us and with the world at large. Kenny has grown apathetic, "flat", disengaged. His passions have fallen by the wayside, and his overall demeanor has been to just "settle" for the mundane. Watching this gradually happen, I was stumped as to the cause. Was he giving up on a future? Was he more content to just give in to his disabilities? Had I failed him in some way?
It was at Shriner's where we both began to notice one thing...as specialists dealt with us throughout the day, many made us feel incredibly uncomfortable about being a "team", about having me present to help answer questions correctly, to interject as needed, and to assist where Kenny struggled. They made me feel like a heavy handed, pushy helicopter mom which made me naturally pull back, and they made Kenny feel as if he wasn't "stepping up to the plate" as a young adult. No amount of explanation of this invisible disability seemed to help, and we have noticed how regularly people are treating us this way outside the medical setting as well.
The psychologist, who should have truly been trained at least a little in Fetal Alcohol Spectrum Disorder (FASD) was actually the worst, trying to insist that I not be present for the interview. I offered to sit back down but also added, "He has already answered important questions incorrectly today, and he thinks he is right, so go ahead but you are not likely to get correct information." I told her I would sit silently, and Kenny could answer anything as best he could without my input. She reluctantly relented, though was clearly displeased, despite Kenny saying he wished for me to be there to help answer questions if his brain hiccuped.
Despite the fact that Kenny had already confidently stated he had never had issues with anesthesia, when he had definitely had issues in the past.
Despite the fact that Kenny couldn't recall the name of the medication he is on.
Despite the fact that Kenny offered the wrong dosage amount of that medication.
Despite the fact that Kenny had to stop and think when asked about how many siblings he had.
Despite the fact that Kenny could not at all recall what grade he is in.
Despite the fact that Kenny couldn't name a single activity or interest he had when asked, and his brain just blanked out.
Despite the fact that Kenny, though he tripled checked his packing, had not brought anything to sleep in and slept in jeans for two nights because I hadn't checked all of his items myself.
All of this, which happened in a single day, and still we are made to feel as if somehow, we are unhealthily yoked to one another. How anyone could witness such lapses and not understand Kenny's difficulties and the need to have someone assist him is beyond me, but somehow he is still deemed the "boy who never grew up" and I am the proverbial "helicopter mom".
It was on the drive back to the airport the next day where the light dawned on us both.
"Kenny," I started, "What do you think is really going on for you these days? You just aren't yourself any more, and I don't know what to do. Have you given up? Is there something I can do different?"
He sat there, mulling it over, and eventually responded that he just didn't really know, but he agreed that he felt "flat", and had for several months. We spent the next few minutes sort of warming to the conversation, each of us feeling our way toward the exact words to describe what was going on.
Then we started talking about the day at Shriner's, and how awkward it really is becoming for both of us with others who don't understand. We can't find the right words to help others see that Kenny needs regular assistance, even if on some days it looks like he doesn't. He is so understanding about my side of this, how it feels to be in my shoes and be judged.
As we continued to talk, poking and prodding at the problem at hand, it slowly clicked for us what our real problem is.
I need to Lean In.
I have leaned out too far, and though understandable at this stage in his life for the normal brain, it is causing a disconnect for Kenny. And I have leaned out because others who think they know what is best for him have judged both he and I, and we are each too busy trying to keep others from judging us or making comments. We have cast aside what works for us, because it disturbs others to see how we must be a team.
Finally, Kenny turned to me and said, "Mom, I know this is hard, but what I want to do is give you permission because maybe that will help make it easier for you, and make you feel less like a pushy mom. I need you to take control, I need you to tell me what to do on some things. I don't want to be a burden on you, but I am afraid I will have no life at all if you don't because my brain just can't. Others will never understand, and it bothers me so much what people say to you that they don't have the guts to say to dad or me, but I am giving you permission to push me, to tell me what to do when I don't get it, and to help me have a real life."
He put his arm around me, and said, "Please be my helicopter!" and with tears in my eyes, we both laughed.
You see, without help, Kenny's brain doesn't initiate actions on his own. We have seen a dullness settle in because he has spent far too much time this summer in front of screens playing video games or watching cartoons (Yes, at 18 he loves cartoons, Sponge Bob being his favorite...FASD means mixed maturity.), and I have let him try and direct himself around things because he is an adult and it feels wrong to dictate to an adult what they can and can't do with their free time. Yet, as he pointed out having observed me with Matt and Josh, I am naturally a non-helicopter mom...letting them fly places alone, ride bikes all over town alone, handle their social life on their own, etc. So Kenny wisely explained to me that my natural parenting style is in conflict with what he needs, which is the exact opposite, and yet then when I do "lean in", I get criticized which is even harder because it really ISN'T who I am or how I parent.
This kid is so astute, it blows me away sometimes. He has the ability to see things from so many different angles, he always makes me see things differently.
But Kenny can't do what other 18 year olds can do, he can't have free time and actually think of what to do with it. Yea, seriously. So he defaults to the screen. It isn't that he doesn't want a variety of things in his life, but his brain can't initiate it. For example, he will only buy blue Powerade. Why? He loves the other flavors, too, but as he explained it, his brain can't handle making choices so it picks one, and as he says, "defaults" to it. Same thing with eating out, he never veers from getting a hamburger, even when at a place where he loves other foods...because his default makes it easier than sorting through choices. He has even asked me to suggest a different flavor or meal so he has diversity, because he literally can not do it himself.
So Kenny, without direction, defaults to the "easy" setting, using a screen. He admits he doesn't even LIKE it as much as he does it, and the minute someone suggests something else, he will jump to do it, but his broken brain can't initiate it in the moment.
No one understands that my son, without guidance for the rest of his life, will stop doing things because he can't make them happen on his own. How does one explain THAT to someone? My son is brain damaged. He doesn't look it, and often, he doesn't act it. He is also highly intelligent. But he is brain damaged, and nothing will change that.
All day, throughout our travels, our conversation continued as we tore apart the last several months, dissecting it so that we could reconstruct a way to walk through life that will work for each of us. Oh, this lovely young man of mine cares SO MUCH about my life, too! We talked about his future, his dreams...which he admitted he had sort of cast aside recently because it seemed too hard to reach for them if he didn't have me as his partner. He was willing to settle because he thought everyone else would think it was stupid for him to have his mom by his side helping him, and I was willing to allow him to settle because everyone else keeps telling me I am somehow parenting him poorly.
They don't know, they never have and they never will. And I am sorry, but I will be DAMNED if I am going to let what works SO WELL in that brain be wasted solely to satisfy others!!!
As the day wore on, I literally watched Kenny come to life before me. He excitedly talked about working with kids and deeply desiring that for his future, as well as wanting to learn more about business, and we talked about his capacity to take college courses with the right game plan in place (asynchronous, one at a time maybe, other accommodations in place) so that he could study politics, history, and theology. Many times he said, "But that means more work for you, mom, and I don't want to be a burden." and I told him I would much rather have THIS Kenny in front of me and work hard to help him, than to see the dull version we had been living with recently and have more free time myself. I explained he was never a burden and I always had a choice, and I choose to help him in this world, just as I would any of the other kids in the ways they need it...and likely will for a long time to come as well, for he isn't our only special needs young adult.
We decided I would "Lean In" and help him manage his clothing choices each day, which are always wrong for the environment. We decided I would "Lean In" and help him get off the computer and suggest hobbies and remind him daily of things he can do each day other than screens (we both see a tremendous difference in brain function when he is not using it for escapism too much). We decided I would "Lean In" with helping him get his daily personal grooming done each day. We decided I would "Lean In" and offer suggestions for different foods to eat and different beverages to drink. We decided I would "Lean In" and help him imagine a future that is brighter than being a mere stock boy at our store, something that is a fall back for him but would not help him use the gifts that God gave him.
Basically, we decided I would "Lean In" in every way, and he promised to do his best to make sure I was never a crutch, and he would do his very best to handle as many things as possible on his own, but the initiating pieces appear almost impossible for him. We established a weekly meeting together, just he and I, to go over weekly, monthly and yearly goals, and to see where we need to adjust my "Leaning In".
The animation I saw was almost shocking versus the sluggish Kenny we have had. There was an immediate, tangible difference. And you know what? I will never let anyone else make me feel like I should leave my son alone in his disability ever again. I totally own this one. I was testing the waters, trying to discern what is reasonable and what his needs are. This is true. But I also, sadly, let the opinions of others cause me to pull back precisely when I should have Leaned In.
As part of our conversation earlier in the week I had been telling Kenny that no one at church really knew him, that he was not putting himself out there in the ways I know he can, and I couldn't understand it. Was it that he felt uncomfortable in our new church home? No, that wasn't it, and as we talked he came to realize that it was an overall "flatness" that had nothing to do with church, but he could see what I was saying and understood that. Sunday evening, after this awakening, the kids and I went to a church event where over dinner and drinks we discuss issues of the day and how they intersect with our faith.
It was as if God was affirming for me that the direction we were taking was indeed the right one. The topic was gun control, and Kenny was back to his usual old self again, so obviously different from these past several months that we all noticed it. His critical thinking gifts shone, he was spot on with his analysis of various situations, and as usual when it comes to these topics his memory oddly isn't an issue and he used data to support his statements. Basically, he presented as the bright young man we have missed so much!
Then God hugged me via a message I received after returning home from someone in attendance. She and her husband were talking on the way home, and her husband said, "That kid is going places!", and she had wanted to share that with me. Oh, how I needed that affirmation! She had no idea the perfect timing, and how God used her with that small message of hope for us.
When will I learn? When will I stop worrying about being counter cultural? When will I stop being concerned what "the world" thinks about how we live our lives and remain firm in how God has guided us to live and parent? This is my weakness, my fear of others' opinions of me. We have an extraordinarily different set of circumstances and disabilities we are working diligently with to try and get kids as far as they can possible go. We are working with disabilities few understand or can see.
No one likes to be criticized, it hurts. Sometimes it hurts a lot. As our kids mature, the criticism increases. I have been advised to develop a thick skin, and yet that thick skin, if developed would work against me. The world, and my family, needs softness, it needs tenderness, it needs forgiveness and awareness and vulnerability. Thick skins wipe away a lot of what I feel is important to model. I don't believe in thick skins, but maybe I can view it differently so it doesn't hurt quite so much. Maybe I can look into Kenny's eyes...or Angela's...or Matt's...or Olesya's...or Josh's...and see all the reasons in the world that make the criticism and the pain worth it.
Yea, I think that is a better solution.
Lean In...Thin Skin.