This is a MUST READ for any parent who has a child on the spectrum or, honestly, any child that struggles socially or academically. I will tell you it is raw and real and there is NO sugar coating…but that is how it needs to be because this is written by a person on the spectrum who has lived it….and she is offering a very honest and REAL warning to parents. Even when the writing is out of YOUR comfort zone or makes you uncomfortable…KEEP READING. Do it for your spectrum kiddos because their lives will be richer for YOU having done so. READ ON, my friends!
My youngest child, the little wild man that lives in my house, just flew past me like a blur as he headed out the garage door and into the garage with the door slamming behind him. It’s Saturday, we’re still in jammies and I have no idea where he is going and at such speed. At this point in my parenting life, I’m good with not knowing. I have come to terms with that and don’t even feel a need to yell after him asking him what he is doing. I am content with my lack of knowledge.
I used to think I knew a lot, that I could be considered a relatively smart person, but kids come along and they have this not so gentle way of reminding me that, in the big picture, I know nothing. My extremely intelligent 15 year old has clearly schooled me in how much I don’t know because when she asked me to quiz her in chemistry, I truly did my best. I tried to test her on her chemistry homework and, well…let’s just say, it doesn’t go very well when you can’t even begin to pronounce the words…much less determine the right or wrongness of it all. Science and math have never been my happy place. I’d honestly choose child birth over word problems because at least child birth ends. The torture of word problems never really leaves me. That is largely why I have my first degree in history and a second in American Studies. Very little math required.
The very first time I learned how much I don’t know was shortly after autism fell onto my proverbial plate. I think it was announced to the universe, on that exact day he was diagnosed, that this mom clearly knows nothing….n-o-t-h-i-n-g, nada, zip, zilcho. He went on to have four more evaluations and four more diagnosis’ so I am going to assume it was announced to the universe a few more times after that as well. Repetition just makes it clearer I suppose. I thought I was pretty comfortable with my lack of knowledge, despite my dual degrees from the university and another two teaching credentials, but I will tell you it has surprised even me that the more I learn, the less I know. Despite all the book learning I have paid for, I still know very little.
I was reminded of my lack of intelligence when I stepped into my first credentialing class for special ed. I had no idea that despite my decade of autism trench work, I’d need to learn a second language. There is the whole other secret language the educational establishment keeps to themselves in order to describe and manage the educational experience of the kiddos in need of extra help. Even after ten years in the trenches with autism, I found it mind boggling that I knew none of the secret words and understood less of their secret academic-acronym-ish language. I knew what they were talking about, I actually had trench experience doing it day in and day out, but I did not have the catch phrases in my vocabulary like the instructors and other students. And, I might add, parents of autistic kiddos were not consulted when the secret language was created because, if we had been, it would have been simpler. After a few weeks in classes it actually started to feel like the secret language was created to keep everyone else out of the inner circle and to keep the makers of the secret language in an elite position.
I still don’t understand the need for the secret language other than it keeps the elite in a position of elite-ness and the rest of use confused, excluded and feeling as though we are somehow less because we don’t understand. Terms like IEP, SAT, ADD, LRE, ED, LD, ABA, FAPE, ABC, ASD, FBA, ADA, LEA, ID, NCLB, CST, DSM, LEP, ITP and MMR…just to name a few. It really came to a head when I heard a professor start to teach about ‘backward chaining’. HUH? Backward chaining? I have spent YEARS taking on behaviors and even setting up the behavioral programs for my boy’s teachers and not once had I heard such a word. The word game the educators play was becoming ridiculous. It seemed as though they were taking simple concepts and making them unrecognizable to the typical parent who was actually in the trenches and performing the tasks they described with the big words every single day.
It wasn’t long after this I came to start up Autism Sparkles, both the blog and the Facebook page of the same name, and my lack of smarts hit me all over again. It was here that I came to realize how very much, despite my life as an autism trench veteran, I still have to learn. Traveling around the streets of the virtual Village of the Wonder Souls, I had neighbors from all walks of life. Good people. Hard working people. Big hearted people. Smart people. Different cities, different states, different countries and….different autisms. As I walked virtually from house to house, as we met in our proverbial street, as I opened my mail box and uncovered new sparkles, I had this humbling moment and I learned the one thing that I now know for sure.
Though the universe has proven that I know very little, there is this one thing I now know for sure. It is the only thing I know about autism that is in actual stone. Crazy as it is and even though many of us autism parents find common ground and sameness in our need to stick together and lend support, autism is still different for each of us. I have humbly come to see that autism is VAST and the spectrum umbrella is IMMENSE, even endless in its scope and combinations. Straight autism. Autism and epilepsy. Autism and chromosome deletion. Severe, mild/moderate, high functioning. The varieties are endless and the combinations intense. Each and every child under the umbrellas is an original, each one a masterpiece in their own right. You can call it autism, you can warehouse it as a generalized spectrum disorder but, truly, each and every kiddo is marvelously different, unique and profoundly original and each parent paints with different colors on their canvas as they travel their own path that leads to their private destination.
The other thing I know for certain, for sure, for real… and it’s genuinely the only other speck of knowledge the universe has left me with…is that some places on the spectrum are more difficult to navigate than others. Severe, mild and high functioning are all different states within the country of autism and there are even smaller counties inside each state that bring even more variety. There can also be some boundary disputes that make the county or state you live an actual gray area but, despite the grayness of some edges, the part that is clearly black and white and outside of the gray zone, is that everyone has a different autism. And, truth be told, unless you live or have lived in that particular county or that state, you don’t have the authority to talk about any place you have not lived.
The only knowledge I have been left with and the only truth I am certainly sure of is that you cannot question the places you haven’t lived in, the streets you have not stepped onto and the shoes you haven’t walked in. It may look similar, it may sound the same but if you have not walked in the shoes and slept in the bed, and ate at their table, you’d do best to keep your thoughts inside your head. And, as we have come to believe in The Village, finger pointing is considered bad manners in any country so we just don’t go there.
In the land of Autism Sparkles, in the Village of the Wonder Souls, support and love are all we do. It’s really all we’re good at. The Sparkle Mommas posted a sign as you enter town reminding all who enter that kindness matters and finger pointing is not okay. They even posted a few PSAs at the boat launch about stirring the pot just to be safe. It’s better this way because we can not support one another through the rough spots or look on the brighter side if we have wasted our energy stirring the pot and tearing one another down during the waking hours. Besides, stirring the pot and finger pointing would only wreck up the late night get togethers when the Wonder Souls meet in the street after the kiddos go to sleep to soothe the souls of friends and make sure everyone has eased their minds enough to rest.
As for the universe, I think it is finally at ease with my lack of knowledge and, out of sheer kindness, has generously left me with the one truth that matters…Stand up, support, love, spread some sparkle and REPEAT.
I had to drop off lunch money at the middle school today for my boy’s lunch account. Instead of formalized and sterile “social skills” classes, I have opted for trying to find real life situations. Our middle school happens to have a functional kitchen and they not only make much of their food but they also have several choices. Autism, being the harsh food critic it can be, does not often lend itself to a lot of food variety but my boy LOVES the cafeteria and WILL surprisingly try new things occasionally. As well, eating hot lunch also forces him to converse with the lunch ladies EVERY SINGLE DAY…and I like that. He even came home a few weeks ago telling me HE ATE FAJITAS and that made it all worth it.
Today, as I am heading in to the office to fill up his lunch account, I run into one of his teachers. She smiles and tells me she wants to share what happened with my boy. I feel a little at ease because she is smiling. I figure if he threw a chair or slammed a door they’d have called me already and she certainly would NOT be smiling.
The story, as told by his teacher, went like this:
Teacher talking to my boy: Would you mind eating lunch with our new student today?
My boy: Why would you want me to do that?
Teacher: Because it’s lunch time and he’s new and he might like to have someone to talk to during lunch.
My boy: Well, I don’t think that’s a good idea.
Teacher: Why not?
My boy: Because he should keep his mouth shut. He shouldn’t be talking while he’s eating.
All I could do was laugh because autism can turn something so simple into something SO black and white. Autism makes me laugh OUT LOUD…you just can’t script this stuff.
It was on the winding drive up to Sugarloaf that I noticed the familiar hill rising up on our left. Actually, driving beside it, I can remember those late summer afternoons on the ridge and it indeed seems bigger than just a hill back then. Maybe it’s a mountain and not a hill…I’m not sure the difference. It’s more than a hill you can walk right up without stopping. If memory served me at all, I seem to recall that when I last walked that rising piece of earth in search of my spectrum kiddo’s lost Lego piece, it took me three separate rest breaks to make it to the top during the search and rescue mission. I will tell you it felt like every bit of a mountain on that day we scoured the brown dirt for Fire Toa Jaller’s silver sword.
Looking back over a five year’s distance, I can see a lot of things happened on that mountainous hill. From losing Jaller’s silver sword to the foal whose life was spared to the sleds in the back of my van as we drive, I realize, the road has been long and good. It’s funny how the universe and God are such expert crafters and have this way of weaving layers of substance into our lives.
The mountainous hill I have come to love stands at the edge of Granite Station. Once upon a time, way back in the late 1800’s and early 1900’s, Granite Station was a stage coach stop in Central Cali. Today the mountainous hill is at the back side of the chimney that marks where the stage used to make its stop. The day we saw her again, we were on our way with other friends for a day of sledding higher up into the iced peaks of the Sequoias.
Five years ago, when we were new to Cali after our move from Florida, I remember how it felt taking drives to Granite Station with my kiddos when we used to check on our friend’s horse. The horse he rescued happened to be pregnant and, with him often out of town, he needed help checking on her. I enjoyed the drive and the peace so I volunteered to periodically take the drive up to Granite Station. I enjoyed the freedom of climbing to the top of the mountainous hill, of walking around to find the horses on the property and, for as many miles as I could see, looking out upon that seldom found and often craved bare-ground-touching-blue-sky serenity that lives at Granite Station. Divorce will make you crave that serenity and I was craving it as much as the air I needed to breathe.
It was on one of those roaming walks across the mountainous hill that I became aware, mostly by the sound of my spectrum kiddo’s voice rising with sudden and fierce agitation, that a beloved and critical Lego piece was missing. If you are not yet a Lego builder, finder, lover, you may not know that one eensy-teensy piece can throw an entire character into ruin, can make a truck into a crumbling heap, a boat into a sinking scrap pile. Losing a piece is not easy to swallow. Well, it’s actually quite easy to swallow, as a matter of fact, and we’ve lost a few that way as well but I won’t go into that now. It’s neither pretty nor clean.
Losing Fire Toa Jaller’s silver sword that day was d-e-v-a-s-t-a-t-i-n-g. On the mountainous hill we scoured the earth around us, backtracking our steps with four sets of eyes fixed into the dirt but despite Herculean efforts and desire, we never found the critical silver sword that would make our Lego Bionicle Jaller whole again. I remember the insistence, the pleading and the panic in his voice. It was a sound that would become the hallmark of the autism stage we were in at the time.
During those early days in Cali I would drop everything to fix the panic, to ease the anxiety and calm the chaos he was trying to eliminate from his life. It even took me a few complete meltdowns that year in our new school before I came to see that turning myself into a fixing wizard was not the answer. I was continually scrambling to make it better but, in the big picture, this was not helping him and, if anything, it was causing him to derail further. The behaviors he was getting mired down inside of, in his bid to seek perfection in all things and with my wizardly power aiding his mania, were now interfering with his academic future. It was getting serious f-a-s-t and it was becoming apparent, I was doing him a disservice by helping him to believe that Mom could make everything in his life perfectly pristine.
Shortly after the last meltdown at school I had an enlightening moment of my own as it became clear for the first time that, in my bid to make it better and ease his panic, I was taking away his ability to learn coping skills and mature. I decided then and there that I would no longer be his enabler. I would no longer let him believe it was okay to fill himself with such panic during his blinding bid to seek and retain perfection in his life. That was one of the first moments I can remember when I knew I would be in for a fight. I would have to push back and consciously begin to work toward desensitizing him. I would have to be strong enough to say…our life will go on despite this loss or imperfection…and stand beside him through the ugly moments until he could come to believe it too and learn to cope with imperfection and even the concept of loss. I will say I stood up and found my backbone more quickly than he found the skills to understand it could be okay. It took him a while to realize that even if mom could not fix everything and present him with perfection, life would still be okie dokie. It took time, it took ugly moments, it took some push back for him to finally see and be able to internalize that it would indeed be okay if everything was not in his or my control. We also practiced saying new words every day. Simple things like, “It’s okay,” and “It’s no big deal.”
That year was the year the kids and I moved by ourselves to California as the divorce our family experienced became exceedingly real. That was the year we left our home behind and found a new one. That was the year we said good bye to our neighbors and friends and came to a new state where we would be forced to find new ones (even though we still loved the old ones). That was the year we said good bye to the school and the teachers and the librarian and the families that we loved and who loved us and we set out to discover a new academic life. That was the year we all had to start over and we went through some awkward moments as we grew and stretched and morphed into more resilient individuals than we were when we left Florida. That was the year we all learned that there was grace in imperfection.
Not once did we stop loving or supporting each other through the rough spots because, as we found out, the rough spots are when you grow and learn and become seasoned in life. Sometimes you even have to lose things, shake things up, to grow into a healthier version of you. That was the year a Lego on the mountainous hill taught each of us that even when we lose control of life, even when the pieces don’t all fit together perfectly and we are in transition, it will still be okay… if we stick together. Sometimes, it might even be better once you get to the brighter side of the rough spot.
The rest of the story unfolded on the mountainous hill at Granite Station when my friend’s horse finally had her foal. Driving up to Sugarloaf was the first time I had glimpsed the mountainous hill at Granite Station in many years and I was reminded of just how deep the ripples of Jaller’s sword were felt and how far that simple lost Lego piece reached through the community. As it turned out, the foal born on the mountainous hill was surprisingly not perfect. It was born with a funky foot that normally, for men like my no nonsense ranching friend, would have meant a swift and practical death for the baby horse. For all practical purposes, a horse that cannot walk unassisted is of no use to a rancher.
The first time he called to say the foal would have to be put down I pushed back kindly as friends can do to one another. Our friend, an old fashioned rancher whose bottom line is practical usefulness, had never know about disabilities before my spectrum kiddo. Luckily he was wowed by the quirky brilliance that lived in such opposition to all the man had been taught. For him, disability had always meant inability and my son had caused the man to throw out every truth he’d ever known. Different suddenly became ‘W-O-W, that’s autism?’ Had the foal been born prior to him meeting my spectrum kiddo, I am certain the foal would have been put down. After losing Jaller’s sword on his mountain and participating in the search himself, the hardened rancher came to understand that different isn’t less and differences can open tired eyes to miracles. The same kind of miracle he saw unfolding in those hills as my boy walked into the middle of six of his rough-around-the-edges ranch horses and, as we watched, my boy began to quietly speak, to lecture those horses on the exact measurements and color of Jaller’s sword…just in case they happened to see it. And while he gave the description, those ranch horses gently stood at attention, giving my son the the only hint of manners they’d ever shown and, bless their hearts, they appeared to take in every single word. A lot of things happened on the mountainous hill that the rancher could not logically explain.
The next time we spoke, when I didn’t ask about the baby horse, he asked me if I wanted to know how it was. When I nervously hesitated, he went on to tell me that his vet friend said they can put a prosthesis, a brace of sorts, on the foot and it can work. He insisted the foal wasn’t going to win any races or shows but it would be just fine and, in my heart, I could see he knew…different might not be perfect but it was valuable in ways he’d never understood before my boy stood on the mountainous hill.
That day when we drove past the mountainous hill and made our way up to Sugarloaf in the Sequoias for our sledding trip, I realized the search for Jaller’s sword had done more than just churn up dust on the mountainous hill. My spectrum kiddo, who hated snow years before and asked every fifteen minutes if it was time to go because he was bored… had ceased his need for perfection and control. He’d actually gone on to love sledding. In fact, the boy who loved nothing more than electronics made snow balls, he hiked up the four hundred foot run with his sled in hand and he sledded and crashed and even skidded over the mild jump without complaint. He tolerated the cold and he tolerated the fact that he would not be handed electronics to soothe him. And thanks to one spectrum boy and his Lego, the search for Jaller’s lost sword rippled far enough to touch a hardened rancher who found his own grace in our search for the peaceful side of imperfection because, as we all discovered on the mountainous hill, imperfection is actually just an opportunity to discover a perfect kind of grace.
Autism is the craziest food critic I have ever met. Impressed by nothing and limited to a increasingly small menu, kiddos on the spectrum do not make meal time easy…not by a long shot. I try to respect my kids’ wants and likes and have been a pretty mellow food mom for the most part. Over the years, years from my own childhood and theirs, I have had the opportunity to sit in many boats and hang with many clubs of food thought. I have never ascribed to the ‘clean your plate’ club philosophy of forcing all food devoured, no matter the drama involved because, well, that’s just crazy. As a kid it didn’t make sense to me and it still doesn’t now so I don’t go there. When you’re full, you’re full…right? I have also never liked the “eat whatever you want whenever you want” kind of philosophy that lets kiddos just eat junk. Both those boats can be sold off right now because, to me, they are both faulty boats.
The other less faulty boat I tried to sit in for a while was the one I came to hear about while living in Ohio. A friend invited us for dinner and I heard them talking about the “no thank-you helping.” I was curious. I watched my friend spoon a very small portion of the offending food right on to her daughter’s plate. Hmmm. I never said anything but thought to myself it was a darn clever idea.
Though my oldest child, my daughter, has always been a very good and adventurous eater, my spectrum kiddo who is my middle child, has not. He was aspiring to be a member of the boat that only ate chicken nuggets and french fries like most kiddos and I was fighting it as best I could. It was a tough fight and he is a formidable opponent. So, sitting at that table…I did it! I bought that boat right then and there and I sat right down. I owned that boat and became the queen of the “no thank-you helping” brigade. Me and my three kiddos were going to become “no thank-you helping” crew members.
That boat sailed right along (and fairly well I might add) until the spectrum kiddo started nearing those teen years. Not quite in them but he was hovering. We were eleven when my boat sprung a leak. Not that kind of pin prick that trickles with water kind of leak. Oh goodness no. This was that kind of “oh my goodness, did an elephant land here?” kind of hole in our boat. It was the elephant-ish version of big.
We were at grandmas house and it was both the zucchini and watermelon that he refused to eat. I get the whole zucchini thing but the watermelon just got me good. I could not imagine how a kiddo, any kiddo, could detest watermelon. I mean, seriously, w-a-t-e-r-m-e-l-o-n! So, being me and the lovely autism mom I wasn’t really being that day, I thumped my foot down in the bottom of the “no thank-you helping” boat and made my ‘no thank-you helping” declaration. We will try the watermelon AND the zucchini. My boy is pretty even tempered most of the time these days and we have done this before so he didn’t protest at all. I cut a very small piece of both items, no bigger than a dime mind you, and gave them to my boy. He swallowed them down, cringed a bit and did the nasty-medicine-head-shake just before he drank a LOT of Gatorade to cover the taste.
“See? It’s not bad. People actually like this stuff.” Is what I told him as he devoured the Gatorade. He, on the other hand, was not impressed or convinced. He looked at me and with hardly a tone in his voice, said, “Okay,” neither in disagreement or approval. And that would have been the end of the conversation and my boat would have continued to float nicely with no hole in it if it had not been for the elephant that fell through the middle of it that night, right after kiddos were showered, jammied and nicely tucked into a warm and snuggly bed.
That is when I heard the peaceful sweetness of my night shattered by the sound of vomit being blasted out of my son’s body as the elephant landed hard. I’d like to say it was the sound of vomit flowing into the toilet but it wasn’t. In the middle of his own confusion, his aim was a bit off and he hit the bathroom door dead on and the chunks that were once nice and tidy inside my son’s body were no longer tidy at all. The chunks were sloppily cascading in all their red wonder down the front side of my bathroom door. The next wave hit the bathroom rug but, by the third wave of flying chunks, my boy found his aim and the toilet. Right here is where I will put your fears at rest by saying that though my bathroom was now cloaked in red and chunks that were flowing in creek beds about my bathroom, doors and floors, it was not blood. It was red from the hot dogs he had eaten that night. Somewhere in his body, the hot dogs, the watermelon and the zucchini did not get along well at all.
After fifteen years of parenting and three kiddos under my belt who have all had various illnesses and virus’, I can say in complete honesty, this was the worst sick-mess I have ever seen. Red muck everywhere my eyes landed as I scanned the bathroom scenery.
As I surveyed the mess and tried to soothe my boy who didn’t understood what was going on any more than me, I set a warm shower to flowing and let him step in to warm up and wash off while I continued to wonder if there really was a best way to make the red mucky mess go away. I picked up a handful of towels along with some sanitizer and began to clean doors, door handles as well as sinks, walls, floors and the poor shoes that happened to be an innocent victim in the line of fire. As I cleaned up as quietly as I could (because I did not need the two remaining sleeping children to wake and walk into the red mucky mess or to begin throwing up themselves at the sight and smell), I realized that, in the mess, the still-dime-sized piece of zucchini and the sliver of watermelon were sitting in the middle of all the red muck. As pretty as you please, completely undigested, as dime sized as ever and staring boldly right up at me.
That was when the elephant fell completely through the bottom of the boat and the boat sank. Good bye forever. The elephant made its point and I declared to my son right there, as he let the warm water clean away the red mucky mess, there would be no more “no thank-you helpings”…e-v-e-r.
Moving forward from that lovely night, I discovered that my boy is wired differently. No, no…I have known he brain is wired differently for a long time and that is not news to me. What I discovered that night and since, as I have watched him gag and his eyes water as he attempts to eat foods like citrus and a few other offenders, is that his taste buds are wired differently too. Seriously. The boy will eat bananas and apples but I believe oranges and grapes, as well as berries and a few others, actually hurt his mouth. He honestly gags as the tears roll down his face. I used to think he was just playing games with me but, anymore, autism is a funny friend and I given in to the fact that there are things I will not fully understand and yet they will still be true. We currently sit in the “I’ll provide healthy food choices and you eat which ones you like” boat and that’s working just fine. No elephants allowed or needed! You can see where the alternative got me and I am not going back to that bathroom of the red mucky mess e-v-e-r again.
Okay, I have a pet peeve I’m going to share. This last week the monster reared its ugly head again and although I try hard to be accepting and tolerant, this one is getting to me….so I am sharing with you.
Did I miss the generational memo that some knucklehead sent out that said parenting was supposed to be easy? There seems to be this sentiment among parents today that parenting was supposed to be fun and easy and comprised of little Ken and Barbie dolls that speak on command, don’t talk back and don’t fill their diapers with the smelly stuff. Some parents seem to be suffering under the delusion that children were supposed to be another fun night out and they seem downright resentful of the realities of parenting. I have even started hearing a lot of grown-ups complaining that life with kids is just too tough, not what they signed up for, and a whole lot of other drivel that reeks of self indulgence.
It seems someone in my generation, or the generation shortly after, has started this rumor and there are some of my generational people and generational neighbors who have bought into this delusional way of thinking…hook line and sinker. Lately this rumor has gained such popularity that parents are actually flocking to web sites to vent their frustrations anonymously as to how their life with children is just such a struggle. From one parent complaining that she isn’t able to get her manicures with regularity because it interferes with her kids’ activities to another saying she just can’t stand always tending to others anymore. One mom complained she never knew she’d lose all her free time and sometimes she opens her wine bottle and never closes it back up. Another complaint stated that parenting is so much harder than it was in past generations?
Who started this rumor?
Who would be so gullible as to believe such a rumor?
My question for them is …seriously? Can they be serious? Why did you have kiddos anyway? And, honestly, did you intend your child to be an accessory on your list of wants or did you realize you were being entrusted with the care, nurture and raising of an actual human being? I am confused.
Our generation has the world at their fingertips, so many advances, that this almost doesn’t warrant the justification of a response. But…I would be so remiss if I did not point out at least the most obvious. When you get down to the nitty gritty and admit it, our generation, unless we are trying to be green and environmentally responsible, doesn’t have to struggle with cloth diapers or even glass bottles. And, as far as the parent’s complaint that there is so much more competition today to meet the pressure of excessive scheduling, I would say past generations probably had us beat in the backbone department and they also indulged the whims of their children less back then (and I say that as a child who was raised in those “days”). Back in the “day”, parents also had a handle on the value of using the word “no”.
I have to say as well that from what I have heard and read, most of the complaints have come from parents who live a life with a spouse in the house and who do not have a child with a disability and have never once faced down a deadly disease taking hold of their child.
So, truly, what are you complaining about?
Let me please set the record straight, without any candy coating, and tell you the truth about parenting:
Parenting is hard. Some days are messy and loud and mushy. Of course it’s full time. Of course it’s going to be both dirty and smelly and the little people you had such fun creating are going to be absolutely and decidedly uncivilized. Multiply that by twenty seven if you have boys but get used to it because that is their job. The days are going to be long and the house is going to be consistently messy…no matter how many times you clean it up. Whoever led you to believe that having children was simply a way to allow you to keep up with your trendy neighbors led you wildly astray. These kids you are creating are little “people” and they did not ask to come into this world. You chose them. They are not props. And, to be clear, I want to make sure I say this as well: manicures, spa days, nights out, drinking binges, luxury vehicles, Bunco parties, bling and ‘escape the kids’ vacations are not owed to you….they are OPTIONAL at best and for a lot of hard working parents…they are non-existent.
If you want to know what it’s like to face a real daily challenge in the parenting arena, just holler at me and I will hook you up with parents who face REAL struggles every day with children who have disabilities and diseases. Not once have I heard these parents complain about their lack of manicures or show resentment for the all nighters they pull with their children. They are some of the most stand up, knock your socks off parents I have ever met. They truly wow me. From the friend of mine who has already lost a spouse to cancer and is still battling cancer with their child… to another friend whose autistic child not only doesn’t sleep but also has daily meltdowns that last several hours long …to yet another friend whose child is nearing the teen years and is non verbal and not potty trained.
Let me be very clear in saying…the following list is compromised of those parents who have earned the right to vent:
- Parents of children with disabilities are the parents who are allowed to vent.
- Parents of children who have pure melt downs (these are NOT tantrums) that last four hours straight are allowed to vent.
- Parents with children that do not sleep at night, because their brains will not settle, are allowed to vent.
- Parents with children whose cognitive levels will never reach their actual age level are allowed to vent.
- Parents with children who have physical disabilities are allowed to vent.
- Single parents are allowed to vent.
- Parents of children who struggle with any kind of disease are allowed to vent.
- Parents with a disease themselves who are raising children
- Parents with a spouse deployed and serving this country
If you involve yourself in this level of parenting then by all means, vent, complain and scream out to the world because you truly face parenting challenges every single day. The really quirky thing about this pet peeve of mine is that the parents who are “allowed” to vent…they really don’t. They may seek solace and comfort in a trusted few friends who understand their challenges but I don’t know of one who would sit there and whine and complain about their children or the lack of time they have for manicures. Not one. They no doubt see the challenges in their life but the ones I know step right up and they find the smile and the humor, even the humanity of it all, before they let the inner diva start broadcasting.
I would ask the DIVA parents, before they vent anonymously…what is there really to complain about? If your children are healthy, I am not sure I understand why you need to complain at all. If your complaint is that you are no longer able to practice self indulgence or live a self centered life, then please put on your big girl panties, or your big boy chonies, and deal with it. Suck it up if you must because parenting is hard work. Oh, and by the way, Welcome to life. Give your children a parent and a role model who is a grown up and who can look past the manicures, the wine and the escape vacations to tend to your children without resentment or complaint.
Sure…we all have rough days….days are long and hard, some are even unbearable, and that is part of parenting. Vacations are great and we all need a break on occasion but those vacations are for AFTER everything else is taken care of. When the children’s needs are met, then by all means, do some taking care of you. And, next time, before you complain and whine or drink yourself into oblivion, take a look at your blessings. Look around you at all you have and all you have been given and ask yourself what it is you are complaining about. If you children are healthy, if you are healthy if you are not living in a war zone, if your spouse is not off fighting a war…then please, take a closer look at just how much you have and how much more difficult your life could be.
Okay…my pet peeve is complete. Thank you for your patience .
My daughter, at fifteen, is quite the cook. Immensely more than I was at her age. Tonight she made spaghetti squash for the first time and though my spectrum guy is not one for veggies or new things, he actually tried it.
Mom: Do you like it? It tastes like spaghetti with butter on it.
My boy: Well, that’s not entirely true, Mom.
My girl: Are you seeing a pattern developing here?
My boy looks puzzled by her words. He then looks all around the room. I realize he doesn’t understand the way she has phrased her question as autism’s social graces often do not catch these subtleties in speech so I step in to explain in simpler language.
Mom: Not that kind of pattern. Not the kind of pattern on a wall. A pattern of behavior, a pattern of you trying new things and liking them. It’s like forming a new habit of trying things and liking things. It’s a pattern because you have done it several times this last month.
My boy: Well, I might not try anything else new for a while.
My boy: Because I tried it and now I’m done with new stuff and, Mom, that didn’t really taste like spaghetti at all did it?
Mom: Not really, buddy.
He is nothing if not literal and boldly honest :).
Here’s the funny thing…autism and my boy never stop teaching me. NEVER…ever. Every day is enlightening, learning and jaw dropping. I never saw that side of autism coming either but autism is simply like that.
As a grown up and a parent you think you understand a lot of things. I have been a parent for fifteen years. Fifteen years! I know stuff…but, well, not quite enough to take on my oldest son. Generally, when I start to talk to my kiddos about something I kind of have the script in my head. Like..this is what I want to tell him, this is how he will respond and here’s how I’ll explain it. It’s easy. It’s straight forward.
But…it never really is.
I was talking to my oldest son who is now 12…almost thirteen. He is the second oldest of my three children, my middle child and my wild ride through the autism spectrum. He is some of the most awe inspiring, knock the wind right out of your sails kind of conversations I have. He makes me realize I understand NOTHING. When I am very lucky, he lets me into his view of life.
Here’s how it all went. Simple and yet astounding…at least it was to me.
Mom: Hey buddy. Last year we sure had a great academic year. You rocked the school year (which was no easy feat because it was our first year at middle school), made the honor roll and made great choices.
My boy: Uh huh. (He was clearly unimpressed).
Mom: This year, I’d like to make our goal to make a good friend.
My boy: What are you talking about? I have good friends, Mom.
Mom: Really? Buddy, I haven’t noticed any friends. No one came to our house to play last year and you haven’t went to anyone else’s house.
My boy: Why would I want to do that? I don’t want to bother my friends at home.
*mom’s jaw hits floor*
Seriously, this is NOT the script that had been playing in my head.
And, voila….the boy is absolutely on the mark and Mom never sees it coming. He may or many not have friends but it is his perception that matters. In his mind, in his heart, his level of friendship is okay with him. These are the moments when his clarity and his wisdom floor me. These are the moments when I take all my mom-wisdom and realize it’s of very little use when it comes to parenting this child. Autism or not, the boy is brilliant. I am blessed and, honestly, I like autism. Dare I say it? I love autism. I do. I like what it and he bring to me, how they better me. It’s a lot of work and worry and grief at times but it is worth every moment. With that simple explanation, the boy shot Mom right out of the water.
He was right.
He is happy with his level of friendship. He is happy with the amount of interaction he is having. It was clear, this was Mom’s issue. I relented because I could see his wisdom. We axed the goal and let the boy be and I chuckled as I realized I’d just been schooled by my boy and, once again, autism and it’s brilliance set a new goal for ME.
So, back in the fall, the kids and I went to to the mall to buy new clothes for back to school…simple, right? Oy Vey…I thought so too. But, with a fifteen year old, a twelve year old and a ten year old, well, you never really know what might come up.
It was all going pretty darn well according to mom-standards when we pushed our luck and went into the Vans shoe store. The ten year old wore out four pairs last school year. He is ALL boy, as rough and tumble as they come, and picking out two was a breeze. He had his two picked out in less than a minute. Teal with red laces and red with black laces. Easy-peasy-lemon-squeezy. He is my picky guy so I thought I was home free with his quick choices.
I was absolutely bowled over by what happened next.
It’s funny how autism and a different view of life can totally sneak up on you. Sparkle moments are clever like that. I love these moments but it never ceases to amaze me how much they catch me by surprise. I never see them coming.
Mom: Hey, buddy, what color shoes do you think you want?
My boy: Naw, I’m good.
Mom: What? No Vans?
My boy: Naw, I don’t want any.
Mom: Really? They’re pretty cool.
My boy: Yeah, see, that’s the problem.
Mom: It’s a problem for them to be cool?
My boy: Yeah, cause every day people are telling me how cool my shoes are. “Hey, cool shoes,” or “Hey, I really like your shoes.” I mean they do it all the time. They’re always talking to me about my shoes! It can really start to bug a guy, you know?
Mom: Really? They’re too cool to wear? People like them too much?
My boy: Yep, it bugs me, Mom. I just want them to stop talking about my shoes. You know?
Mom: Yeah. It surprise me but, yeah, I get it.
At this point, when I have all but given up on him getting new shoes, the nice sales guy walks up right after I have stopped speaking. In that moment when my mind is still tumbling over itself with awe and shock for the new lesson I have learned, still trying to process my boy and his feelings, the sales boy steps in with a lovely pair of gray Vans.
The young sales boy tells my son, “You’ll like these. They’re the plainest pair we have. NO one will EVER notice them.”
And, with that, my oldest boy smiled and said, “You’re right. Those are pretty plain. Okay. I’ll take that one.” And he did. He didn’t even try them on.
That day we took home the teal pair, the red pair, the plain gray pair and one happy boy content with the gray pair that would not be on anyone’s radar. And, they all took home a mom that was just a little wiser than when she walked into the Vans store because, truly, my kids keep teaching me new stuff every day. I don’t know what I’ll do if they decide to stop educating me on the finer points of parenting!
I could move.
Well, if it weren’t for the kids’ schools and IEP’s and my parents…I could…I could move right on up to Oregon, right this moment. And, if I were to move…I would move to the tree house resort or, as they so eloquently call themselves, the Treesort. I would. I really, really would.
The best vacation the kids and I have ever taken happened last summer. After driving up through the gorgeous Redwoods and enjoying those giants, we landed in Takilma, Oregon’s Out n’ About’s Treesort. Before we arrived, we even got emails from the treefairy! It was outstanding. Five days, sleeping in the treehouse, swimming in the gorgeous and cold river fed pool, riding the horses, playing kick ball and frisbee with new friends, the Tarzan Swing and ZIP LINING! What could be better? I will tell you absolutely nothing was better than watching autism on the ziplines…and the ADVANCED ziplines. Take that autism!
Well, the only thing that could have been any better was to stay forever. To move into our tree house permanently, drop out of school and take up permanent residence in the trees!
I remember being the first person awake in all of the treesort and how quiet it was there. Through our window, I would wake to see the horses in the pasture next to our treehouse, the pool calm and reflective of the beautiful blue sky and even the rain clouds that hung around for a few days looked delightful in her water. It was a place of peace and tranquility during those mornings before all of the children staying in the treesort woke up.
There must have been twenty kids, aged four to seventeen, and the children ALL played together and ran in packs. It was tremendous to watch the dynamics of the children unfolding. All of these children from different towns and different states, of different interests and background, melded together as though they had known each other for years. It took them only days to bond in ways that other friends need decades. These new found friends were in tears upon good byes and even us parents remarked how odd it was that we were already so close and so terribly sad to see one another go.
The treesort is a remarkable and magical place and, for the life of me, I can hardly explain why. But it is and all of our memories and our new friends are stored safely and are still warm in our hearts. I won’t even begin to explain Taco Tuesday. Sadie and her grandkids may be the only people ever who will break out in side splitting, spit your drink kind of laughter at the mention of Taco Tuesday in Takilma.
Sadly, we didn’t get to stay forever and, in hindsight, that’s okay too. There was something special about the exact families we met during our week that could never have been duplicated with the new families arriving. No one could have been a better friend to my youngest son than the older boy he met. Priceless and unexplainable how a fourteen year old and an eight year old can become best friends in two days and how two teen girls who are all “teen” can cast aside any insecurities and bond as tight in those two days as it had taken my daughter years to bond with girls back home.
After our mind boggling five days, another family was anxiously waiting to check in as soon as we checked out. Their lovely family would have no part of us staking a claim to their reservation. So, we regretfully checked out of our beloved treehouse but, I will tell you, our memories are so warm and fond that my kids would willingly hop in the car right now and joyfully travel multiple days in our car to go back. The best part of the last day at the treehouse was breakfast with the cook, Steve. Steve made us peach scones that were out of this world. Steve, being the amazing person, even shared the recipe with me when I asked.
I think the next time I visit the treehouse, it will be with women from The Village. That would be some good times and laughing stories to tell. Imagine if we could fill all the treehouses with our girls and have a Wonder Soul weekend. That would be some kind of fun though I am not sure the staff at Out n About would survive. Here’s to planning some adventure in the future. Add it to the Fetchin’ Gretchen Must Do List!!
And, instead of waxing on about how wonderful it was or how beautiful the place is…here are pics….!…you know you’re in the right place when the entire navigation screen is GREEN 🙂
My kiddos having a swim party in a river fed pool, hand lined with rocks and colorful marbles. My kiddos met this bunch of kiddos about ten minutes before they all fell in together as old friends. Kids from Cali, Indiana, Oregon and England. Very cool. And, yes , the water was COLD.
My youngest…zipping away!This was some crazy stuff. The picture above, with my youngest up in the tree is the TARZAN SWING. OMGoodness. They pull you back, up into the tree, about a hundred feet up and then…they release you. Actually you are holding onto grips…and YOU have to let go. W-I-L-D. Mom only did it once…once was clearly enough. My youngest…the wild man…did it FOUR times and would have stayed all day long. He worries me JUST A BIT.
Seriously, BEST vacation EVER. Can’t wait to go back one day 🙂