A couple of weeks ago, I received a question in our Blue Collar Homeschool group that I thought was worthy of more thought and decided to write a blog post about it, recognizing that many of my readers find themselves in similar circumstances, or will as their children mature. In order to protect the identity of the poster, I am not sharing her actual post, but am creating one that is the essence of what she was asking:
"I have just discovered our young adult child has autism, and it feels like we are starting all over again despite the fact they have graduated. I am wondering what YOU do for your own mental health in dealing with your children's struggles? My child is doing better because they have answers, however I am a complete wreck and really have no one to help me. The fact that my child is over 18 makes it all more difficult. I know this isn't all about me, but watching my child struggle is breaks my heart. Do you have any advice?"
First of all, I wish I had this figured out. People look at kids our kids' ages, and think it is sort of "done", and with invisible disabilities no one understands how much care still needs to be offered, how much guidance is required to keep our kids safe and healthy. So you end up dealing not only with the disability every single day, but with the judgment of others, and the natural defensiveness that arises when those comments are made by others. They fail to understand that one of the main reasons our kids don't look like they have a disability is because of the very things they are criticizing! Trust me, I hear story after story, speak to mom after mom on a weekly basis whose kid isn't making it, and the heartbreak is boundless, the frustration is endless, and the compassion from outsiders is non-existent.
Watching the struggle our kids experience, witnessing the hopelessness that enters sometimes because life isn't ever going to be quite what they envisioned, and dealing with the emotional onslaught of another can throw moms waaaaaaay off course. It should, if we are loving as deeply as we possibly can, and are invested whole-heartedly.
Then, we read all about "self-care" and we laugh bitterly, because how in the world do you actually make that happen??? We KNOW we need to pay attention to our own needs, but sometimes there simply seems no way to make that happen in any realistic way. Throw in homeschooling responsibilities and 24/7 relationship with your disabled child with little real break, and it can be isolating in ways even parents of public school attending special needs kids can't really understand. I have been parenting in the special needs trenches for 15 years now, and all of our five children/young adults have special needs...some quite serious. I have gone through the incredibly painful rejection of Reactive Attachment Disorder and the years long subsequent anxiety issues that have accompanied it though he looks healed. I have held kids sobbing from PTSD (and still do), fought for diagnosis of virtually every single disability including processing disorders, Auditory Processing Disorder, and Fetal Alcohol Spectrum Disorder. Not a single day goes by, literally, where we don't find ourselves working through some issue related to disability.
The intensity of thought required to adapt learning environments, teach differently, bring in appropriate visual supports, explain something four different ways until the "aha" occurs, and much more is more mentally exhausting than I could ever explain...or probably even know myself. The repetition as brains lose information is maddening. But it is the emotional pain that is the hardest to deal with, it is what rips my soul apart. I have absorbed so much anguish over the years, that it often feels as if I have an imprint of it that is visible to the world. When you love so deeply, it costs you dearly. You also gain immeasurably, but there is no way anyone could ever truly grasp what it feels like to live from one surgery to the next, one emotional breakthrough to the next, one new heartbreaking awareness to the next.
You see, adopted or not, I see only another part of myself staring back at me with tears in their eyes. I know others recognize our differences, they can visibly see that I didn't give birth to my beautiful five...but my heart doesn't seem to know this. There is no distance separating us, there is no "other", only my heart walking around in another body in the world.
So, how do I keep from being a complete wreck?? I try to be only a partial wreck. I am not laughing as I say that, for there is no way I can be unchanged, or unaffected. I will never be the "me" I used to be, so I strive to be less of a wreck than I know I could allow myself to slip into being. Some days that is far easier than others. In a practical sense, here are a few things that have helped me over the years:
1) Reach out. Don't hide it. There is no shame, not ever. When we wall up ourselves due to trying to "pass" as normal, we harm ourselves, and we cut ourselves off from God's love shared with us through the presence and understanding of a precious few folks who care, and want to be there for us. We didn't "cause" any of what we are dealing with, neither did our kids, and we will never pull back from bringing all of who we are to relationships...faults, disabilities, and all. The effort to hide it, down play it, or ignore it is simply too darned much to pull off when in the trenches this long, and it just isn't worth it.
2) I have developed a new phrase over this summer, and that is "take it in dribs and drabs". It is likely to be a looong time before I have the time for myself that I might crave once in awhile. So, instead, I am going to be looking for pockets of time, short spurts where I can focus on any small thing just for me. I realized that I am putting that off because there never seems to be quite enough time to make it "worth it" and really, it is "worth it" even if it is only a 15 minute stretch, because that is better than nothing.
3) Find a community where I can share my own lived experience with people who are living a similar experience. The internet makes this possible in a concrete way. Social media has its drawbacks, for certain, but it also has enormous pluses. I only know two families in "real life" who have kids with FASD, and with whom I can speak honestly and openly about the challenges we face. The head nods are worth their weight in gold!! But it isn't enough. In the virtual world, I can connect with hundreds of families who I can bounce ideas off of, find true understanding, and have unguarded conversations with. This also helps me feel as if I am not going crazy when unusual things happen with our kids, as there is always someone somewhere who can chime in and say, "Oh yeah! Us too!" and it is amazing how much of a relief hearing those simple words can be. It has saved me, it has informed me, it has carried me through very difficult times.
4) Get Away. I mean it...GET AWAY. You have to for your own sanity. I realized about 2 or 3 years ago that things were not getting easier, they were growing more exhausting, more challenging, and heavier as the future loomed and all of us were scared about what may or may not happen. Honestly, daily we are there right now, and it is a very heavy load to carry. In our case, the mental toll that being the external brain for three others takes is staggering. I seldom stop to think about it because I have grown into it, but trust me, I do far more day to day thinking of general things than just about anyone I know, because my beloveds can't on any given day...or they need help recalling...or I need to repeat it...or ask for clarification because reasoning is so far off. Being a homeschooling mom, as the mom is who wrote the question, means always being on 24/7.
If you took someone caring for an Alzheimer's patient and told them to be "on" 24/7 for years on end, you would realize they needed a break regularly, but no one sees that need for moms like myself or my friend who wrote the question, and yet it IS similar, and in my case, times three! Dominick and I realized awhile back that I can not keep going if I don't get out of my "work place", which is my home. He gets to leave work and come home to a place of rest, and I never get to "leave work". So he has blessed me with complete understanding and we came up with a plan for me to get completely away four times a year, and for more than a day or two, because you can't drop off this amount of stress in a day or two. By about day four I am finally able to let go of all the pent up emotions, the concerns that are so real, the being on guard to keep people safe and secure. We haven't quite hit it, and real life has interfered in unavoidable ways, but the truth is, this is likely to be a lifetime of caretaking to some degree for me, and I need to establish patterns now that allow me to be my best self with our family.
It only took me 15 years to figure out the necessity of this and not feel guilty about it.
Well...I still feel guilty, who am I fooling? But I get that I need it.
5) Cry. A lot. As needed. I don't walk around near tears all day, but when it gets to be too much, I don't hesitate to let them flow. My kids need to know that I hurt for them deeply, it has connected us for them to see my own compassion and pain felt for their circumstances. It has taught them that there is no shame in letting the pain out, and often it really helps! When it gets to be too much, when I am frustrated because I can't "fix" enough, when I am so very scared about their future and how we can best provide for them long term, I cry.
6) Have faith. For me, it is in God of the Christian persuasion, for some it might be taking to heart the Buddha's teachings, for others it might be meditation to bring one into connection with the power of the universe. I can't imagine making it through all of this without someplace to take my brokenness. I can't imagine making it without the place to put the care for my children into someone/something else's hands. It gives me a respite, even if only temporarily but in that moment it surely helps.
7) Find a friend...one who "gets it", who can talk you down from your craziness, one who will cry with you, care with you, and get ticked off with you when others treat you or yours badly. I am blessed to have one, but it took years to find her, and the fact she too deals with disability in her life helps her really understand...and it helps me feel less needy because when things are hard I can be there for her, as well.
8) Use humor! When it is so bad you want to scream, find a way to laugh about it! I know this doesn't always work, but we have laughed over "brain misfires" here unabashedly. To the outside ear, we can sound callous, but to those of us in the inner circle of our family, it is how we best deal with what can't be changed...we sometimes elect to just let it be and find the humor in it. We have running jokes over misspoken phrases, we gently (and I do mean gently or it goes too far) tease over actions that were actually hilarious if they didn't point so strongly to disabilities. We just do our best to take it in stride on the days we can, and it helps defuse things an awful lot.
9) Grace Upon Grace...a phrase we picked up recently from our pastor fits beautifully in our family. We offer it to one another daily...hourly...minute by minute. We practice it concretely. We know people in our family will make mistakes that can be a pain to fix, but we offer grace as we realize they don't WANT to do that. My kids offer me grace regularly when I simply don't get what they are thinking or saying, even though it makes perfect sense to them...but not to any normally thinking person. Their kindness and sensitivity toward me and how hard it can be for me to be their facilitator is a true gift of compassion, and the very picture of grace.
10) Let It Go. Sing it loud, drive your family crazy, play it in the car at top volume!!!
These may or may not help anyone reading this, but it is how we deal with all that comes with living an unusual life together. As the question above stated, I get that it isn't "all about me", but for this particular post, perhaps it needs to be...because I always need the reminders as well of how best to deal with the complicated dynamic we have.
And even when we are not "doing well", in some ways, we still are, because we love one another, always. :-)
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