Caregiver verses parent.
I’ve been processing this a lot in my heart, mind...soul. Is there a difference In caretaker and parenting? When you have a child who struggles, I think there might be.
If someone from the outside observed our family we look like we are in the middle throws of parenthood. No more babies, and kids that are tiptoeing on the edge of preteen and attitude, Ok you are right there is no tiptoeing when it comes to the eye rolling, or attitude. It’s here people, it’s all right here. They would observe a slightly crazed mama, And a very calm (and sexiest) dad there ever was. They would see 4 boys and would probably try to figure out their ages and which set is twins, or maybe there are two sets of twins, or maybe there’s a friend mixed in...In any case I’m quite certain they would observe, a Whole heck of a lot of boys. They would maybe even think “normal.” I don’t think in the small amount of observing they would know that one has severe ADHD, and one has ASD (autism spectrum disorder). For this I sing my praises. In the autism world of parenting I feel a sense of camaraderie but also respect and acknowledgment, that kids who are high functioning are greatly different but still challenging in the world of autism. But I would also say I would never ever compare parenting my High functioning child to a nonverbal child, different, and respectfully different parenting/caregiving needs.
But lately my heart has been processing how many times I swing from mama (which is always there) to a caregiver. Because my ASD Child needs me so differently then my other three. And on occasion my ADHD child needs a caregiver over a mama. Is there a difference? Well in my world there is. And until you have walked a mile into raising children with special needs I don’t think all the books in the world can help you understand the difference. And as a parent and caregiver your heart is so flipped and emotional for all the different ways it’s pulled in a matter of a day...hour...minute.
My ASD kid needs me so so many times through his day, not only to provide comfort but sometimes as the caregiver to the ASD, And not the child. But they are acutely tied and wrapped together like a dread on a hippy. And when you try to pull it apart and Analyze it you mine as well sign up for endless counseling and deep deep Swedish therapy (or just shave the hippies head...).
Today for the first time on vacation I’m alone, on a lake, with no kids. It took talking and re talking and plans, and preparations for my ASD kid to get in the boat with out his mama and his caregiver. And as great as everyone tries to be and even is, even the calm daddy, I’m the mama, and I’m the one with him 24 hours a day. I’m the one thinking 500 hundred steps ahead to avoid a melt down when I lose him and can’t get him back. I’m the one who constantly has a backpack with anxiety meds knowing at any moment he might need it, I’m the one who can transition from mama to caregiver to talk about what’s happening. My mama heart breaks, my caregiver heart reacts, and my “just who I am” exhausts and becomes weary.
And even though I’m on constant caregiver mind 24 hours a day, I also miss things or my ASD Predictably Unpredictable child throws me for a loop that I’m not prepared for. Like tubing for three hours and having to stop and then getting stranded with an emotional high stressed child. And sometimes my caregiver, mama, power suits fade away and “Beth, just who I am” is exposed and I lose myself to tears right along side of my ASD child and let me just tell you in case you don’t know that is the absolute very worst thing you can do. But sometimes, flesh out wins. exhaustion out wins, and that’s when grace comes blowing through the brokenness.
Maybe because we have been on vacation for 8 days with the ASD and ADHD children, maybe it’s because I’m tired or exhausted or because vacation and adventure are really difficult things for our family. Or maybe it’s because for the first time in who knows when I’m alone, to gather the running thoughts and actually try to make sense of them.
My high function ASD child doesn’t have a shirt or hat that explains to people why this man child is crying and begging to burn the tube he is currently in, or my ADHD kid is sitting in the middle of the path angry and frustrated that he can’t catch a fish....there is no explaining- there is just reacting but as a mama my heart is defensive for my kids who seem as normal as the next. Except no child is normal as the next, all children throw us for loops like a hoolah hoop on a circus clown. But when in my world, that’s several hoops on a clown on an elephant while the elephant stands on his hein legs and does some kind of very precarious turn/dance/ awkward not normal thing.... whew....see what I mean- no wonder I fall a part next to my crying child in the middle of Steamboat next to a river on a tube in the middle of muddy grass and just cry and cry and cry (and revert back to a child and call her own mama bawling....) Because it’s a lot (just like that run on sentence) and exhausting, and sad. Especially when said ASD child says “mom I hate that I can’t just do it, my heart wants to but my brain can’t and nobody understands.” And then I cry harder and then we become the circus in the middle of down town Steamboat Springs for all the people observing the crazed mom and the crying man child. It’s reality, and its wonderfully and brilliantly beautiful and grief covered, and messy. But isn’t that life?
I guess when it all comes somewhat clear, I mean goggles under water clear, you realize that’s why we have endless amounts of Grace from a Father who cares about the meltdown circus. And it’s why, you who experience the elephant circus, give a certain grace to a parent who has the older child who won’t put the mask on (ASD probs) or the older child throwing a tantrum (ADHD probs) or the mom who doesn’t make eye contact in the target line....(extroverted gone introverted mom probs) because from a distant friends- they seem normal, but reality is they are dealing with some kind of circus that you can’t see. So offer grace, not judgement. (Or a coffee, or gift card, or tissue...)
For me, when I step out of my “mama gone caregiver” attire, what usually is revealed is the tired, over exhausted, and defensive Beth. I don’t mean to be, but my reality seems to be always defending the circus- why they hippie only has 4 dreadlocks left, and a patchy bald head....or why I rarely step away from my kids, why I’m obsessed with routine, why I don’t handle “spur of the moment changes,” why I’m not always good at handling all the unpredictable moments, because I’m constantly trying to stay ahead of the stampede that is ASD, ADHD, moments that will need my caregiver/mama, moments.
So grace. And always Jesus...and endless coffee.
Until the next blog post (another several years) this is Beth, defensive-caregiver-hippie gone bald-Hula hoop on elephant- mama.