Wife. Daughter. Mom to two special kids. My thoughts about stuff in no particular order. WARNING: This blog is written by someone who can be snarky, sarcastic and biting at times. While I don't intend to offend, it may happen. You are under NO obligation whatsoever to continue reading this blog should that happen. And don't take it personally if it does, I've offended so many people that no one reads this anyway. Not even my own mother. True statement.
Even if you don’t have a child diagnosed with autism, you’ve no doubt seen the brightly colored puzzled pieces as magnets on the backs of minivans, charms on bracelets and pictures adorning t-shirts. They all refer to autism as a puzzle piece. But what does THAT mean? I’ve got a kid with autism and I don’t know what that puzzle piece really means, but this morning I had an “aha” kind of moment which is leading me to my own definition.
But first, let’s be sure we’re talking about the same thing. That brightly colored puzzle piece usually has many different primary colors on it: yellow, red, and blue are the main ones I think , or a bunch of different puzzle pieces next to each other. Me, leaning MUCH more toward the literal side of things (gee, Aspie apple fall far from the tree much?) I look at that puzzle piece and think, “What? Is autism something I’m supposed to be figuring out? Am I supposed to try to fit my daughter into a larger puzzle? Is my daughter the puzzle piece with many different colors inside her?” Cuz trust me, trying to figure all that out on a daily basis is a freakin’ mental-suicide-mission (ask me about last Tuesday night and you’ll understand what I mean by that). So I usually just try to think of something else whenever I see that image. Like puppies. Or ice cream. Or family members who tell us we’ve just made up the autism diagnosis to hide behind crappy parenting hanging over a large alligator-filled moat. But I digress.
Switch gears. Hubs is out of town this weekend but last night during one of our steamy, adults-ony texting sessions he told me that there was some kind of kite festival-thingy going on at the park around the corner from his parents’ house. Our daughter had already left the house this morning to go play in the new neighborhood where we’re about to live full time (we’ve been doing home school there during the day since last August), so I drove my son to the park on our way to the new house just to see what was up. Sure enough, there was a BIG party going on at the park, no doubt about it. It had only been underway for a half an hour and already there were throngs of people and it looked like loads of fun including bouncy houses, an aerial gymnastics area, kites, bubbles and balloons. But my immediate thought was not about the fun it would be for the kids, but the overwhelming amount of emotional energy and WORK it would take for me to take them there: I’d have our two kids, plus the neighbor boy no doubt (whenever the 6 year old neighbor boy is staying with his grandma next door, my daughter is GLUED to him like white on rice. He’s a GREAT kid and easy to be around, so that wouldn’t be a problem, but it’s just one more little person to keep track of). So it would be me with one child who refuses to go any faster than a snail’s pace (some of it due to physical limitations, some of it behavior), and then a child who gets SUPER ramped up in crowds and I could just see it instantly become something like this siren song, “Mom, LOOK HERE! Can we get it? Huh, HUH? Can WE???”, “MOM! Look over there! I wanna do that!”, or “Mom, I wanna go in that slingshot NOW!!” And I would have to make a zillion decisions and make sure that she and her little buddy had fun, but try to help keep a lid on things. And in the end, by the time I drove around the park, I just couldn’t muster any energy for it.
Enter guilt. LOTS of it. I used to LOVE to go do things like that. There’s a jazz/arts festival thingy going on in downtown Our Town this weekend too. My hubs and I used to do ALL THAT STUFF all the time. And now it all looks like a major hassle: to keep the kids together, to keep one of them HIGHLY entertained so we didn’t hear five minutes into it, “Is this all there is? I’m bored. Can I go to the car? When are we going to go home? I just wanna be with my cat.” I get exhausted just thinking about it. So we didn’t go. When I turned the corner into the new neighborhood she was ensconced in a street-wide Nerf gun battle. I thought that looked like a much better way for her to spend the rest of the morning, rather than getting over stimulated, over heated and crazed, only to spend the rest of the day coming down off of that artificial high.
Back to the puzzle piece. What does it all mean? As I was driving around the park this morning it occurred to me that at least one piece of the puzzle that is autism is the puzzle piece of self regulations. Chances are if your kids are typical, this phrase isn’t a part of your normal vocabulary. If you have a child with any kind of sensory issues, chances are you’re pretty familiar with the word. Well our daughter daughter doesn’t have much of it. On Easter when our plans with my in-laws were abruptly blown up in our faces (another story for another blog) we ended going to a big recreation area not five minutes from downtown OurTown, chalked full of hiking trails. It was a beautiful late afternoon and we thought it would be nice to take the kids out on some of the easier trails. Uh, we were WRONG. SO WRONG. Our daughter REFUSED to stay on ANY of the trails and was basically running amok. My husband started boiling and I would have too, had not this little phrase popped into my head, “self regulation”. It’s something we’ve been working on in O.T. She’s working on “grading”; moving her body from slow to fast and fast to slow gently and with control. Ya, the big “C” word. She can’t do it. I mean she will, with LOTS of practice, but overall she CAN NOT regulate her body through time and space. NOW I understand why she had such a FIT when she went hiking with our aforementioned neighbor boy and his grandma a few weeks ago. Do you what that nasty neighbor lady did to our sweet baby girl? She had the NERVE to require her to stay on the trail. WHAT was she thinking? Boy was our daughter HOT. I mean FUMING. The rest of the weekend was a nightmare (rages, tantrums, nasty attitude about EVERYthing), all because she was told she had to stay in a confined area out in the wilderness. And there we were weeks later, out on a trail and she was going bonkers because that’s all she CAN do. There is no self regulation to be had. So we can talk about park rules, respecting nature, the importance of not trashing wildlife till we’re blue in the face (or veins are popping out of our foreheads as in my husband’s case), but she just CAN’T do it. Yet. And so YES, all of that looks like HORRIBLE behavior. It IS horrible to see a child our daughter’s age and size running around like a banchi, but that behavior is rooted in a neurological fact that she doesn’t have the self control/regulation. Yet. I see it as my job to keep her out of situations that she can’t developmentally handle. So that’s what this morning’s festivities at the park represented for me: another open arena in which she would fly apart at the seams with only me there, outnumbered three to one. I just couldn’t do it.
So then I felt bad some more because I wasn’t Mom Of The Year offering to take her, her brother and the wonderful neighbor boy for a morning of fun in the sun at the park. And then I looked again at the gaggle of neighbor kids hiding behind trees and bushes trying to ambush each other with foam darts and I told myself this was probably a more authentic form of fun than any “festival” could provide.
What about you? What’s your puzzle piece? Have you identified it yet? And then what do you do when you do figure out what “it” is?
There’s been a lot of talk on social media and the news recently about the word “brave”. Specifically it’s being used to describe a pro basketball player who’s recently publically stated that he’s gay. For this he’s been declared “brave”. Um, not so much. Before you get your panties in a wad, this is not a blog about the morality of the homosexual lifestyle, although to be perfectly honest, I don’t CARE ONE WHIT if an athlete is gay or not. I’m beginning to think I’m in the minority on this one, but when I’m watching sports on TV (and I love all sports) I am honestly not thinking about his/her sex life at ALL. Weird, right?? It seems that the entire country is completely fixated on who/what the point guard, 2nd baseman, or outside lineman is sleeping with, while I carry on my little happy world of NOT CARING. I’m just there to watch a good game, or if I’m watching men’s soccer, an Oscar Winning Performance Of A Man-Child Who Gets Bumped And Then Falls Down To The Ground In A Blubbering Heap Of Tears. But now we’ve all been forced to “care” because the news of this athlete (a guy who’s been in the NBA for 12 years that no one’s ever heard of) is being shoved down our throats so now the whole subject has entered my consciousness (consisting of six brain cells), and so I’ll just keeping thinking about this till it’s out of my head.
It doesn’t make you brave because you want to have sex with someone of your gender. There, I’ve said it. It just doesn’t. You may hold the very powerful belief that you were born that way, but believing you are or aren’t of a sexual persuasion doesn’t make you brave. Here’s my list of what makes a person brave, in no particular order:
*Brave is the mom and dad we know who found out early on in her pregnancy that their baby was going to be born with A LOT of medical issues, starting with the brain and going from there. They kept the baby and gave birth to her against all the advice of ALL the prenatal experts. They went on to have two sons after that. She never spoke a word. She never walked. She was medically involved ALL HER LIFE. When she passed away a few years ago, they had to change the venue of the memorial service to the largest church in their city to hold everyone who came from ALL OVER to be there. Countless people stood up and talked about how knowing Abby had changed them and that they were by FAR better people for having known her. Bravery is telling “the medical experts” that you’re not going to abort your baby because it may have problems and then taking that baby home and parenting her like nobody’s business every single day of her life.
*Brave is our son who has never ONCE flinched, whined, or cried as he’s been led away to yet another surgery. NEVER ONCE.
*Brave is every single fireman in America who walks into the burning building. Yes, they are highly trained, yes they are VERY educated on everything fire-related. But underneath it all, they are incredibly brave.
*Brave is every single policeman/woman. From tiny three-people departments in tiny little towns to the Chicago Police Department which is losing the battle against evil on the streets these days. Brave are their families who literally don’t know from day to day whether they’ll see their spouse/parent again after they walk out the front door.
*Brave is every single enlisted soldier or officer serving in the military. Everyday they are willing to die for me. I am NOT worthy.
*Brave is the serviceman/woman who comes back from serving a tour with only part of their body. They come back and put their lives back together as best as they can. One day at a time. One prosthetic at a time. They conquer their demons everyday all because they chose to serve this country.
*Brave are the people who live through horrific accidents and diseases and don’t let those circumstances define them. They press on, they gather up the pieces of their lives and what’s left of their physical bodies, and they move forward with grace.
*Brave are the Boston Marathon terrorism victims whose lives will never be the same, but who refuse to lose hope.
*Brave are the thousands of American students with disabilities who are victimized and abused in schools EVERY SINGLE DAY in this country. They endure a level of physical and psychological abuse that is unprecedented. THIS should be making national headlines. If our society truly cared about every child, it would.
These are just a few of my thoughts and examples of bravery. What are yours?
This is going to be a pretty straightforward post. It’s a subject that’s been brewing in my brain for years and in the past few weeks I’ve had some epiphanies that will only make sense if you’re on the same page as I. So parents of children with special needs, this post is for you. I want to encourage you, exhort you, and BEG you to please, please, be with your child during his/her therapy appointments. Please don’t treat your child’s time with a therapist like your car’s oil change. My kids are now 13 & 14 and I’ve seen and heard just about everything in terms of treatments and therapies with kids with special needs, mainly because we’ve done just about everything when it comes to therapies, and if there’s one thing I’ve learned, it’s that there’s still so much to learn. And the great thing is, learning this stuff is fun! No really, it IS fun, not like that whole Ovaltine trick my mom played on me when I was little, “It’s chocolate milk. Really, it is.” Oh, she meant CHALK-olate milk! But I digress.
When the kids were little, in Part C services (and then even beyond that because our local home health care agency provided superb in-home therapists for our kids beyond age 3), we were fortunate enough to have in-home therapies, so with two little ones who were (and still are) 16 months apart in age with special needs, I had a parade of people through my house every week. I want to add here that our therapists were BRILLIANT. RIDICULOUSLY gifted, smart, and completely brilliant. I know beyond a shadow of a doubt that God put each of them on this earth to work with kids and I am SO blessed to have had them in our family’s life, and I KNOW our kids are so much better off for having had them to play with in their early years. I still keep in touch with them because they were, and are, just that special. We are very blessed.
Okay, back to the subject at hand: Did I fully participate in every single therapy in my home every week? No. There were definitely times when I busied myself with housework while the therapist was there. I used it as a babysitter at times no doubt. I know many of you are probably really indignant right now, saying all kinds of bowling-words at your computer screen saying that I have NO business telling you what to do or not do with YOUR time when it comes to your child’s therapies. I’m not trying to offend you, I want to empower you that your presence WITH your child during his/her appointment, DOES make a difference in how/if he reaches his goals. It makes a difference in his quality of life in general. And just as importantly, it will TOTALLY empower you as the parent, the most important person in your child’s life.
Now I’m going to say something that if taken the wrong way, is going to sound like I am beyond full of myself, but hang with me for a moment. I hear from a LOT of people (fellow parents, acquaintances, doctors, etc…) that I sound SO FREAKIN SMART…..they want to know .how I learned all this stuff about sensory integration, praxis, motor planning, dynamic and emotion sharing communication, the layers of executive function, etc……? It’s not because I’m a geekish bookworm. I’d love to be, but I don’t have the time (as I type this a book from the library on autism collects dust next to my bed and is about to come due, because I’d rather read about Stephanie Plum’s latest escape from death. There you have it, true confessions). 99.9% of everything I’ve learned is directly from therapists. By sitting there with them, as they’re putting my 14 month old floppy-baby (think baggy of jello) into the corner of a box of uncooked pinto beans (because cooked pinto beans would be gross) to try to get him to sit up on his own, or as I was sitting at my dining room table as the speech therapist put dollops of peanut butter on a tongue depressor on the back teeth of my four year old who only ate mushy foods, I listened as they explained things to me and I asked questions. LOTS of questions. ANYthing I know, I know because I sat there, asked questions and listened. As I said, my kids are now OLD!! They’re teenagers (eek, how’d THAT happen??) and I have yet to meet a therapist who didn’t welcome a question and who couldn’t explain the how and why they were doing things with my kids. In fact in just the last couple of weeks I’ve learned from my son’s OT/PT (yep, she’s an OT AND a PT!….think about that level of education for a minute!!), that my son is “fixed” or unable to freely moved from, the lateral plane. It’s why his gait is more side to side than it is forward. He recently got orthotics that are more like leg braces (there’s a shoe insert, but the plastic part also goes up his shin and has a velcro strap that keeps it in place) and that has improved his strength and balance TREMENDOUSLY, and I think his gait is improving too, but he’s still pretty “stuck” in that lateral plan. When you and I walk, our bodies typically press forward, promoting that forward energy. When we do that, we’re in what’s called the “Sagittal plane”. Until three weeks ago I had never heard of that. When she first told me, I couldn’t remember what the name was, so I called it the Sagittarius Plane. This stuff isn’t easy and I didn’t learn it over night, but I remembered it long enough to write it down here! So by me getting a handle on what it means to be “fixed”, now I can learn how to get “unfixed”, or unstuck in that lateral plane. Last week we talked about what you have to do to get into another plane, conceivably that pesky little Sagittal plane…….you know what it is? Huh, huh, do ya?? Me either. Before you do ANYthing you have to SHIFT your weight. My son doesn’t shift. Think about that. Before you move from ANY position, before you can move through space, you have to shift your weight. Well, my son doesn’t do that, due to low muscle tone, weak core, and being “fixed”, and probably some other more technical reasons that are above my pay grade. So we’re working on “shifting” his weight through a variety of exercises, both at therapy and at home. But my point is this: there’s NO WAY I could have EVER figured that out by sitting in the waiting room knitting. And trust me, I’d MUCH RATHER BE OUT THERE KNITTING!! But I owe it to him, I owe to his FUTURE to buck up and be there in his therapy sessions while he’s working and playing (and yes, I take my knitting back there, but I also put it down to participate and get my hands on his body so I know what things feel like).
And that’s the other part of this equation: not only are our kids with disabilities NOT in therapy like a car getting an oil change, while we play “Words With Friends” in the lobby, “best practices” dictates that the therapist work with YOU, the parent, first and foremost, and THEN the child. Yes, the therapist has the training, the skills, and the technical know-how, but YOU live with your child the other 167 hours a week. A 50 minute session with only the therapist and child there is not going to amount to a hill of beans in the long run. Your therapist really needs to be working THROUGH your hands so you know how things feels. I’ve yet to meet a therapist who isn’t happy and very willing to teach YOU how to do everything. In fact most of the therapists I know would welcome a parent who wants to get their hands in there and do it all.
For the one person who’s still reading this and hasn’t made a voodoo doll in my image yet (don’t worry, it’s a lousy image to begin with anyway), please know that this mindset of “here’s-my-child-who-you-can-fix-for-the-next-hour” that many of us parents have adopted at one point or another, is not entirely our doing. I think because getting services for kids with special needs to begin with has been such a knock-down-drag-out fight in the United States since FOREVER (and we only have services now because of the parents who have fought for them before us. We owe those parents a debt of gratitude we can NEVER repay, make no mistake), there’s been an unspoken attitude from some institutions and therapists (including, but not exclusive to the school system) that says, “Just give me your child and I’ll work on him for awhile, and then I’ll give him back to you till next time. If you’re really, really interested, I’ll tell you a couple of the things we worked on today, otherwise, I’ll just see you next week.” We as parents, have tacitly allowed an insidious message that goes along with that practice that says “We’re the experts, you’re just the parents”, to take root in our lives, and it’s NOT serving our kids.
I KNOW we as parents need breaks. I home school our two kids with special kids. I KNOW I need a break, or 20, every week. But using your child’s therapy appointment time isn’t the time for it. We as parents CAN do this. Maybe we only do a few minutes each day of two or three activities that the therapist does during their sessions, but that three or four minutes a day is like pennies in the bank. It DOES add up. Just a few months ago when my son started a new round of physical therapy (we had taken a “forced break” while we lived in CA because I couldn’t figure out how to access any PT, OT or ST without going through the public school system, something we weren’t willing to do), I learned about something called long sitting (sit against a wall with your legs in front of you) and how it can help lengthen and stretch my son’s hamstrings. It’s working! We’ve done it a few minutes here and there throughout the week (when I remember) and the PT can tell a difference! Yeah for my son! So, be encouraged, what you do DOES make a difference.
I don’t think therapists expect us to go home with our kids and work with them eight hours a day on this stuff. They know we have laundry and Stephanie Plum books to read. They know we forget how to do some of the stuff, but I do know that it encourages them in their profession when we are there in the same room with them
and that we are at least trying to pay attention and that we DO believe in what THEY’RE doing with our kids, because they’re also highly invested in their lives. I mean the whole reason that 99% are there with our kids is because they really want to see kids reach their maximum potentials.
I hope you feel empowered to join your kids on the journey, even though it may not be as exciting as reading how Stephanie’s next car is going to get blown to smithereens. But I do know that you’ll savor the memories you’ve made with your child long after you’ve forgotten how the book ends
We are assured and know that [God being a partner in their labor] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose. (Romans 8:28 AMP)
One of the many lessons I’ve been learning recently is directly linked to this oft quoted, but I would argue, largely misunderstood verse from the New Testament book of Romans. The conviction on my heart is this: When did this become the anthem, “everything’s going to be okay” that’s so pervasive in our churches, and even the secular culture? Paul wrote the book of Romans to the Jewish and Gentile Christians who were living in Rome in the times of the early church. Rome was a multi-cultural, mutli-ethnic city, but no one was driving around with “Co-exist” bumper stickers on their Vespas. Christianity was NOT tolerated by anyone, Jewish or Gentile. Christians were regularly hunted and persecuted simply for practicing their faith in Jesus Christ. Paul himself had been beaten, tortured, and enslaved multiple times for speaking the name of Jesus. So here he was writing to a group of people who were trying to live an illegal life of devotion to the Son of God who had risen from the dead, all while raising families, going to work and trying to stay alive under the harshest of circumstances.
This verse says more to me in what it DOESN’T say. It DOESN’T say “all things work together for YOUR good”. It doesn’t say you’re going to look back on whatever circumstance you’re in and laugh about it later, or even see the logic in it. And I don’t know about you but I don’t see the logic in babies being born still-born, dying shortly after birth, or contracting deadly diseases. And no, I don’t see how dads walking out on their children and wives is EVER for anyone’s good in the long run, or any number of the other countless injustices in life. Often the reality of what we deal with here on earth is just brutal and devastating. Who can wrap their brains around moms dying of breast cancer while her children are still young? Or babies being shot dead as they sit in their strollers?
I think to truly understand this verse you have to first “get” what a relationship with God is all about. The sum total of a life knowing God is NOT about putting the shattered pieces of your life back together. Chances are though, through loving God and making Him the number one priority in your life, your life WILL become markedly better, but that’s not God’s purpose for creating you, seeking you out, going after you with the most powerful force of love in the universe. No, His purpose is to put His godly character into you so He can have complete and total fellowship with you, uninterrupted by sin. He wants to instill peace, authentic joy, serenity, and holiness right in that same space where fear, anxiety, anger, loneliness, and control are currently living.
God is holy and because He is holy, He knows that we can’t be one with Him while we’re still full of darkness. But His love for us is so total and so complete, that He comes into our lives, no matter what the condition, and loves us unconditionally. Right where we are. And we never, ever have to change. The circumstances in our lives have but one purpose: to drive us to His arms so we can “trade up” so to speak. Got loneliness? God has TOTAL communion with Him to fill in EVERY single gap and pang of desperation in your heart. Got anger? God brings total peace to EVERY situation. Every situation, not just the ones that work out in your favor. Got fear? God has a track record of every second in the history of the world of NEVER leaving one of His followers, NEVER betraying one of His children, and never EVER leaving someone to figure out on their own what’s going to happen next.
God is good and He is good all the time, but He never promised us that we would see that all things work together for good. I don’t know about you, but my walk with God requires a daily gut check to see if I’m really walking WITH Him, or if I’m just spouting hyperbole and trite little sayings. Am I really using my faith to trust God at His word, even though ten out of ten times I can’t see what or why He’s doing stuff in my life? Or do I throw a fit because I can’t possibly see how ________, ____________ or _________ could be in the category of “all things working together for good”, mainly MY good? Door number two for me most of the time.
So for me, this passage is about WHO is on the throne. If it’s truly God, then I don’t have to see how things work out. In fact, I don’t even concern myself with those details. I can just take God at His word that He IS at work in ALL areas of my life and the lives of His precious people whom He created in His image (that’s all of us, for those of you keeping score at home), and that He IS allowing/disallowing some circumstances based on furthering HIS kingdom. If God’s not on the throne, then I’m calling Him a liar. His promises aren’t true. His love isn’t faithful, and this life is all some kind of cosmic joke. As a parent of a child on the autism spectrum I can tell you that I often don’t see how ANYthing is going to work out EVER and I go to bed feeling helpless and hopeless. But that’s on me, NOT God. I can choose to use what little faith I have to trust God for that minute of time, or I can stab it like a pincushion with pins of fear, unbelief, indignation, and mockery. It’s always my choice.
What’s your choice? To take God at His word that He really does have your back in whatever it is you’re going through? I hope so. And just as importantly to me is that I hope we can be here for each other during the times when we’re too weak to see God in all of this. It would be a supreme tragedy for God to have created all of us in His image and then to not be in relationship with one another when we need each other the most.
I survived this week. Sometimes that’s all you can say, and being able to say even that is sometimes something to celebrate in itself. It’s been a WEEK., but as I sit here writing this in the car at the park (it’s too cold to get out of the car………welcome to Spring in the High Country), I am so grateful and thankful to say that I have the afternoon “off” from one of my kids, as she’s at some friends’ house for the afternoon (or till when they choose to return her).
We read a lot about how parents with kids of autism need services and supports for their kids, and they, I mean, WE do. But what my husband and I need more than ANYthing is time off from autism, even if it’s just for the afternoon. And it sounds so easy doesn’t it? I mean when you’re on the “normal” ship cruising the Sea Of Life your kids go to birthday parties, soccer games, study groups and just regular ol’ playing-with-friends on the weekends. They can skate or bike to their friends’ houses and be gone for hours at a time without hardly any coordination or effort on your part and with virtually no drama (or so I hear). But here on the ship where not one minute of the day is normal, finding appropriate play dates and friends who are willing and able to take your kids for hours at a time is often nearly impossible.
Fortunately, my daughter is with a family today who is heavily involved in Special Olympics (and I think the mom’s brother or uncle with whom she was raised, has developmental disabilities, so this mom lives in the world of disability and is very comfortable and accepting of our daughter), so I don’t think there’s anything she can throw at them that would catch them off guard (I only hope this isn’t the first and last visit with them!!….kinda nervous about that thought).. It also helps that this mom is very laid back (she’s the mom of three boys; there’s only so much you can get all worked up about before your head explodes, usually by 9am), so I have confidence that things are going to be okay. And did I mention the dad of the family is a cop? Oh ya, dropping your Aspie off (who challenges EVERYONE’S authority 27 hours a day) with somone who’s armed to the teeth and has handcuffs is MOST reassuring!! Wonder if he’ll let me borrow them.
I’m going to go enjoy some time to myself. Almost. My son is with me and so is my four legged 120 pound big black shadow in the far back of the truck. But I”m almost alone and I’m counting that as a move in the right direction.
You’re talking to your bff on the phone (thank you GOD for free long distance) and you find yourself tearing up because you realize in the middle of the conversation where you’re trying to recount the frustration that has been the past 48 hours, that you’re grieving the fact that autism has taken EVERY single interaction that could be “normal” from you and your daughter. There is NO normal in your daily life. Not one shred of your time with your daughter can be viewed from the “normal filter”. It’s ALL autism ALL the time. And you think to yourself while your friend is doing everything humanly possible to relate to you and meet you in your frustration and angst, that you would know this by now because you’ve not only been her parent her entire life, but you’ve been homeschooling her for seven years, so you’d think you would have clued into the millions of clues that make up your reality. But in hashing out the frustrating details of the past couple of days you realize that your child isn’t referencing you, as her mom, her coach, her advocate, her friend, or even a person. That truly, during the course of any conversation or interaction with her you might as well as be the refrigerator because she’s not seeing you as a person. And here’s the hardest part for me: It’s NOT PERSONAL. SHE HAS AUTISM. No matter WHAT others around you say, THIS IS AUTISM people. That’s why she’s completely overwhelmed on most days and that’s what’s leading to all sorts of behaviors. It’s why she can only do a fraction of the studying that her peers can do, and what her IQ says she’s capable of. It’s confounding. It’s baffling. It’s autism. And it’s like watching your precious baby slip away from you and there’s nothing you can do about it. You fear for her future, you’re terrified that you may not have one.
But you’re grateful for that one friend who truly “gets it”. She tries to tease out of the knotted fabric the threads that are autism, what are sensory integration dysfunction, and the unbelievable stress you’re living under. So for that light in the darkened room I am truly grateful.
I feel like the guy in the UPS commercial who’s sitting in an empty, glassed-walled office randomly proclaiming “BUSY!……….I’M BUSY!!” to his fellow office workers walking by. We’re not even three weeks into the new year and I’ve already accomplished quite a lot with little or no effort. The jury’s still out on whether it’s all been good, but I’ve been learning, so I suppose it all can’t be all bad.
For starters, I managed to alienate two “friends” on Facebook without even trying. It was a gigantic misunderstanding where I made a comment on someone’s wall (in response to some conversations that person had been having very publicly with other people their wall) and my comment was instantly misinterpreted and then he/she became deeply offended, and then another person took up that person’s offense and proceeded to eviscerate me with private messages. I apologized profusely, but to no avail, really. (Actually, it was definitely to no avail because that second person accused me of some heinous things that I hadn’t said about a different person in an entirely different conversation about an entirely different topic.) Felt like I was being hunted. I’m a little late to the party, but I learned a couple of very important lessons that all of you figured out eons ago after joining Facebook, and that is, that “friends on Facebook” are really not your friends. At least not in this case, because anyone who had truly been my “friend” would know that the comment I made was NEVER in a MILLION YEARS intended to be insensitive, cruel or mean. A true friend would have been well enough acquainted with me that in reading my words, they would have heard my voice in their head and know that I truly care for them and are praying for them (mainly because I said so in the post). They would also know that I use humor to connect with people and am at the same time very sensitive and sincere in how I feel about people (again, because I said so in my post).
But what the Gigi-you-really-suck incident drove home for me once for all is the fact that I had no business in the first place commenting on that person’s wall. Just because we used to know each other (back in the day) means absolutely NOTHING in the real world in which we live now, and in thinking it did mean something, I made an enormously dangerous assumption about the level of my relationships via social media. Friends are the people you can touch, talk to on the phone and whenever you can, see the whites of their eyes. They are also the people with whom you’ve shared some recent and relevant history in order to bring context to your words. Had I had that with the person whom I deeply offended, he/she would have read my post entirely differently and would have known that when I said I was holding him/her up in prayer that I really was waking up in the middle of the night praying over him/her and the direction of his/her life. They would also know that the last thing in the world I would want would be for my words to hurt someone. But because we were literally not on the same page of life (again, it’s all on me, thinking that because we’re “friends” on FB it means we’re really friends) I totally blew it.
The other thing that ugly incident brought up was that even now, after all this time, I still care WAY TOO MUCH about what people think of me. Handing over people to the care of God, as I understand Him, is an enormous daily task for me. Relationships between human beings are messy by definition because all of us are broken to some degree and no one likes to be misunderstood to be sure. But to have people assume the very worst of you, take your words and twist them into a Gordian knot brings out all kinds of my insecurities. And obviously I still have many! So not only am I apparently an insensitive and cruel slob, I’m an insecure and fragile one at that. Ah, it’s a good thing life isn’t a race in which the winner achieves total consciousness (which, is nice), because apparently I’m just starting on my journey.
One of the first things that came to mind when all this blew up in my face was Job. Ya know, that Job guy in the Bible who lost everything in his life within hours? Not that I am in ANYway comparing a simple misunderstanding that snowballed into a sticky mess with losing everything in my life. No, it just brought to mind this little elusive (to me) concept called PERSPECTIVE. Job went from having it all (he was enormously wealthy) to having nothing and being near death within days, and yet he kept his relationship with The Lord strong. It was a deeply personal and vertical relationship, which regardless of his circumstances (which he wisely knew were lateral), he kept his eyes on his beloved Father, his Provider and Protector. I realized that as my misunderstanding quickly turned into an assassination of my character, the people who wanted to think the worst of me were going to do that. And they probably will go to their graves thinking the worst, but God knows my heart and God knows I tried my best to make things better. Very little on this earth is under my control and God can use EVERY circumstance to His glory, even innocent mistakes that we can’t fix.
Not even three full weeks into the new year and relationships are being realigned. I’m learning that I can only do so much to make people understand and accept me, which, trust me, if you knew my story, you would know how enormous that is. ALL my life I have spent an inordinate amount of time and energy trying to prove to people that I am lovable and that I am worthy of their approval. I feel like I’ve always been on the outside of the “cool club” looking in. King Solomon said “there’s a time to reap and a time to sow”. I also think there’s a time to pull back and realize that I have nothing more to prove. The one person who should have been in my corner and loving me unconditionally since day one has recently made it enormously clear that they don’t want me in their lives at all. I mean how much more clear can you get? And the people who are on the periphery of my life NEVER did have my back and aren’t the slightest bit interested in seeing me in a positive light now. But it’s okay. God IS working it out on my behalf. He DOES know my heart and my motivations and He IS seeing me through this. Not only is it not the end of the world, I think it’s the beginning of a really interesting and a much deeper chapter.
Perspective.
Go with God.
And as my daughter is now saying, “live long and prosper”.
As always, I got this idea from someone else, a friend of mine who posted his list on his Facebook wall and I thought it was a great idea. Thanks Dan, hope you don’t mind that you were the inspiration for this.
Here are some things I did in 2012:
*Knitted something for myself for the first time (and no, it wasn’t a dishrag, it’s actually a
herringbone cowl, that turned out quite nice, and is already serving its purpose since we’re now in
single digits on most days)
*Drove a trailer behind the Suburban from Los Angeles to CO by myself (Hayden cheered me on
from the back seat)
*Became more disciplined, consistent, and creative with meal planning (which in polite terms means
I think I cooked some pretty amazing food and put a lot of work into it! There, I’ve now sprained my
arm patting myself on the back)
*Made a whole new set of friends in a new town
*Started going to a small group through our church for the first time
*Created a new support group for families of kids with disabilities in our region
*Wrote more
*Let go of two toxic relationships
Not that you asked, but here a couple of things I noticed when I was writing my list. First of all, I immediately began comparing myself to my friend’s list before I even wrote down one thing about my year. How neurotic is that? Ya, that’s usually how I roll. But instead of going straight to self condemnation (my usual M.O.) I used this as an opportunity to speak some positive life into myself: that I am unique, life is NOT a contest of whose life is more interesting, compelling or adventurous, and that I am living the life that God has called me to live.
The other thing I noticed right away was how HARD it was for me to write a list of things that I had done that were exclusively FOR me or BY me, not an activity or event that was connected to being a mom or wife. Wow. Super hard. Immediately I thought, “Well my friend who’s idea I stole is a guy, so it’s easier for him to come up with a list of things he did that were just for himself, were fun or for the first time, or wacky, or out of character. Well, ya know, he’s a guy.” That sort of thing. But I pulled up short and just tried to own my own stuff. I think by definition, being a mom does intrinsically connect your everyday activities to your children, especially if you’re a full time stay at a home mom who teaches your kids at home like I do. So, note to self, “It probably won’t kill you to go out do a little bit more just for you.” Fortunately the year is young and I have time.
Author’s note: You can see by the date of this posting that it’s after Christmas. I wrote it two weeks before Christmas, but got caught up in the battle myself. I think I’m coming out on the other side. Hope to see you there.
Have you ever noticed that Christmas can be the toughest time of year for some people? Maybe it is for you, or maybe you know someone who struggles mightily during this time of year. I think Charles Schultz knew what he was talking about when he gave Charlie Brown those words with Lucy in the epic “Merry Christmas Charlie Brown” television special. In it Charlie Brown, talking to Lucy, the psychiatrist, (“5cents please”) says he knows how he’s supposed to be happy and filled with holiday cheer, but he just can’t seem to get in the spirit. He just doesn’t feel it.
I had a little bit of that this year so I can relate. Within my group of friends in the past year one had a child who had to have multiple surgeries within a very short period of time (the first one was expected, the rest were not), another had lost a beloved family member and was doing the hard work of grief pretty much everyday of the year, another had a sudden job transfer with her husband and had to relocate across the country, and while that’s not in and of itself a bad thing, it involved all kinds of inherent logistical details (new doctors for her kids who have special needs, new housing, new friends, getting the kids settled, setting up a new household, new church, etc…..). Another was fired from her job do to “downsizing” and had absolutely NO job prospects. Another had a sister diagnosed with recurring breast cancer. Another had yet ANOTHER very tough year with a chronically ill/medically fragile child. And another had a difficult relationship with a parent. So, while my friends were going through all this, and while we were also adjusting to a brand new life in a brand new place (we moved in March of this year to be closer to my husband’s family. A move absolutely ordained by God, but not always a walk in the park for everyone involved), I really began to “get” how tough the holiday season can be for people and why they just want to get through them and get them and put the whole thing in the rear view mirror.
That of course got me to wondering “why”? Why is the time from mid-November through the first part of January so tough? I’d like to offer the supposition that there are two reasons for this. First, I think it is because we as humans are constantly going through “stuff”. Life IS messy. It IS hard, at times. We MUST, if we hope to survive, battle our feelings (which change from minute to minute, or sometimes just go from dark to darker) amid this season that is marked with JOY, which is often completely opposite from what we’re feeling. Joy in the fact that Jesus WAS born to every single person on earth to save us, Joy in the fact that God DOES love us more than we can imagine, and JOY that there IS hope in God. Our human eyes and hearts may not always see or feel the joy, but it’s there because God put it there.
Secondly I think the Christmas and New Year’s season can be tough and emotionally confusing because the enemy, Satan, is HARD at work during this time of year. For those of you who don’t have a personal relationship with God, the devil wants to keep it that way and he’ll do anything and everything within his power to do so. He’s not called the Prince Of Darkness for nothing. He DOES roam the earth trying to destroy all of us. If you do have a relationship with God, the enemy’s agenda is the same (to destroy your life), only with the added flair of trying to make you doubt your relationship with God at the same time so he can neutralize you in the spiritual battle. And here’s the big not-so-secret about the enemy: he’ll use the circumstances of our lives to beat us down and make us feel horrible about our lot in life. Ever been fired or let go from a job? The enemy will use the truths of those circumstances to not make you want to get out of bed, ever again, much less get back in the saddle and look for a job. He’ll start with stripping you of your confidence and God-given talents and go from there (think of a piranha stripping a creature to the bone in three seconds flat). Ever have a child rebel and go off on his/her own for any period of time? The enemy will use every mistake you made as a parent and rub your face in it till your heart is raw and you’ve given up hope. Ever lost a child to death? The enemy wants to turn you into a walking zombie for the rest of your life with grief so overwhelming you don’t think it’s worth living anymore and you become a shell of the person you once were. Ever turn on the tv and see the news of innocent babies slaughtered for no reason? The enemy wants you to think that the world is thoroughly dangerous and not safe for anyone. Ever. Were you abused, neglected or did you grow up in a dysfunctional family? The enemy wants you to seek acceptance and love through everything and anything here on earth, anything but God. Control by fear. Control by grief. Control by failure. Control by addiction. Control by defeat.
We ARE in a spiritual battle. The GREAT news is that when you let God into your corner of the universe, there IS hope that in Him and Him alone, that you will make it through your circumstance and come out on the other side of it closer to God and deeper in spiritual wisdom (by the way, it’s never a matter of “finding God”–He’s never lost, He’s right next to you wanting to embrace you the nano-second you reach out to Him). You weren’t created to go through this life without Him. He created you and He wants to live within you. He cherishes each and every one of us far too deeply to let us go through all the human events of accidents, disease, babies dying, divorce and people hurting each other just to hurt each other, by ourselves. Throughout the Bible (Old & New Testaments) there are numerous examples of how God has been grieved and hurt when we hurt. It’s not His will by any stretch that parents abuse their parental authority, or that children die, or that children rebel and turn to destructive things for acceptance and love, or that disease fall onto wonderful loving people. But when it does, no matter what time of year, God is right here for us. I think at Christmas our wounds easily bubble up to the surface.
If you’re reading this and you’re not in a relationship with God this may seem so Pollyana-ish. So simplistic. So ridiculous. I can tell you that walking with God is NOT chanting mantras of “such-and-such is happening, but it’s all going to be fine because Jesus loves me. Ahhhhhhh.” That’s Biblical heresy. But walking with God is putting your faith in Him that He has the bigger picture in mind for our lives AS we go through “stuff” here on earth. He does provide relief, love, and sanity while we’re IN the middle of life’s junk. NO WHERE in the Bible does it EVER say or imply that people who put their faith in God will not experience being fired, being divorced, growing up in crappy homes, or experiencing untold tragedy. What it DOES say over and over and over, is that WITH God you can have hope of getting through it and that He will NEVER, EVER leave your side. EVER. If you’re one of the walking wounded this Christmas season I hope you’ll try to remember that. I know I will.
I have a feeling this post will probably make the most sense to parents of children who have “invisible” conditions like autism, PDD-NOS, and behavioral, emotional, and mental health issues, but everyone’s welcome to read along and join me where we live. This is incredibly difficult for me to write. Once I put it out there, it’s out there. Part of me wants to shed some light on our lives because if you’re reading this and you have a child with complex emotional/behavioral issues, I want you to know you’re not alone. I need to know I’m not alone. The other part of me is terrified that if you read this you’ll look at our otherwise amazing daughter through the lens of “Oh, I didn’t know she had so many “issues”. You poor soul”. And then she’ll be less than the incredible little human being she is in your eyes from this point forward. I think this fear keeps many of us families who live this life completely isolated from the “normal world” for years and years. We want you to know why we can’t attend two birthday parties, an orchestra recital and a soccer game in one week, but we don’t want you to think less of our children because what is “normal” to you is just completely overwhelming for our kids. Some days we can’t do even ONE thing with the outside world (appointments, trip to the library for story time, outings to museums, parks, playdates, and the like). Some days we can’t get one thing done within our own homes for all kinds of reasons; lack of sleep on our child’s part, them waking up feeling “ouchy”, or having a bad sensory day (clothes don’t feel “right”, the toast was overcooked, the eggs were under cooked; our kids can have a variety of triggers that literally unravel them before our eyes and sometimes it takes all day to get them back). So we deal with “stuff” but often alone.
So here’s what was going through my mind last Sunday as we were getting ready for church: “What am I going to say if someone asks me how I’m doing or how our weekend has been?” This is a real conundrum for someone like me who is usually so candid and honest-to-a-fault. Do I just say, “Oh we’re fine”, despite the fact that 24 hours earlier I was out of my flippin’ mind with the child who can start an argument faster than MacGyver could start a fire with a strand of hair and a leaf? How far would I go in answering that question? In all reality we were okay, I guess. I mean we were all still alive. Barely.
Really this post isn’t about what to say when someone asks you how you’re doing. I think we can all agree that that question is just perfunctory and not intended to open a whole big can of worms into the intimate details of your family life. What this is really about is what sometimes feel like living a double life when you have a child on the autism spectrum who can be so incredibly engaging and a joy to be around one minute, and then the very next, if you answer a question in the “wrong tone of voice” or wait too long to respond to what they’ve said, the entire world blows up. And it can stay blown up for a very long time. But then you’ve got to pull yourself together to go to the grocery store, or drop some books off at the library, or go to your weekly mani/pedi appt, your spa day, or your book club, so life marches on and you’re supposed to keep your wits about you so when per chance, you meet up with someone familiar you don’t fall apart like a bad soufflé when they ask you how you’re doing. (Sorry, those last three options were purely to see if you’re still reading this. If you have weekly appts to take care of yourself and you’re able to treat yourself to days at the spa, you’re my hero, but you probably won’t relate to anything in this blog).
The nightmare of last Saturday is probably not unfamiliar to other parents with kids on the spectrum (plus other “fun” issues that make autism seem like a walk in the park): It started immediately after we left a “breakfast with Santa” event, but a big chunk of the day was saved in large part by our wonderful little next door neighbor friend, Kaleb, who spent most of the day with us and acted as a God-sent distraction and buffer between the girl-child and us. But then we had to return Kaleb back home, and my daughter (who’s also part Bloodhound) picked up the fight where we had left off. UGH. That lasted until we went to the Christmas parade in downtown Our Town. HoHoHo. Looking back now (after sleeping for more than one hour at a time for the first time in at least a week) I can see that the avalanche was powered by some innate things that come with my daughter’s autism diagnosis, namely:
1) The inability to recognize that it’s not okay to jump into conversations in which you’re not involved. She thinks just because she can hear two people talking (mainly her father and me in the car, barely talking above a whisper) that she can just jump in with comments, opinions and stories of her own. Usually I handle it better, as it happens about 145 times a day, but last Saturday my hubs and I were speaking barely above a whisper (another special gift of our Aspie is that she has SUPER human hearing) and I was at the end of my patience with being interrupted.
2) The inability to recognize that it’s NEVER okay to comment on or correct an adult’s behavior or what they say (my hubs and I are old-school where we believe that children who really understand what respect-for-elders-is-all-about are much more self confident, self actualized, and very pleasant to be around).
And finally, 3), my daughter’s inability to understand that her flat and monotone voice rarely sounds “jokey”, even if she uses “jokey” words and phrases, but regardless, that it’s never a joke to lecture your parents. All of these traits are completely driven by her Asperger’s diagnosis (and throw in some basic childlike immaturity, which is common to all kids, but the BIG difference here is that many typical kids will file away lessons learned and do their best to not cross certain lines. Not so with our daughter. Everyday is a brand new day. We just call our life “50 First Dates”) but none the less, we ended up having a MASSIVE misunderstanding because she insinuated herself into a private conversation, thought she was making a “joke” and then proceeded to rattle off the laundry list of things we do “wrong” as parents. It was just a bad, bad cocktail at 9 in the morning.
And this is not uncommon with our kids; many of them do NOT understand the basics of how language is used in normal conversations and they often don’t recognize subtle nuances of “higher language”, so we get into these CRAZY loops of insanity and before you know it you are out of your ever-lovin’ mind. Worse yet, you don’t know how to stop the craziness and your child is completely freaked out. You are BEYOND freaked out. The day is shot. You want to drink HARD but they just don’t make enough alcohol.
So, “how are you?” It’s a loaded question. Be ready for the answer.
It’s hip to be brave
TGIDinner ♦ May 3, 2013 ♦ 2 Comments
BRAVERY