I will admit it. I wallowed more than a bit the past week and a half. I really had a tough time getting my head around The Event in our home. It's something that is difficult to spring back from. I needed some time to recover. I was overwhelmed and stressed out and and and and..... Yeah.
I yelled, "I'm DONE," at the heavens, throwing in my maternal towel.
God calmly threw my towel back to me, telling me I most certainly was not, and could not be done.
I wanted to ignore Him.
He calmly waited on me.
I stomped my feet, mumbling, "Fine, but I'm not happy about it."
When I rejoined the land of the living, it was a dear friend who reminded me the best possible way of being done is surrendering my control of the situation to God, by telling me of her own done-ness.
It was a child who died because his country decided his fate was not up to his parents, but up to them. When his parents and another country were willing to jump through hoops for him, his own country decided he was not 'viable,' deciding his life was not important enough. They made decisions they had no business making for his parents. It's other countries declaring awful deaths on innocent women and children with chemical warfare. It these reminders of how hard I prayed for my children, and the miracles they are.
It was a blog post by a writer I enjoy, reminding me that it's okay to be a mess as a mother. She reminded me in this season as a mother, I don't have to be perfect--BUT, this IS my ministry. When I feel the winds of necessary change hitting my home, they need to begin with me. Motherhood is not the romantic version I dreamed of as a child. It is hard, tough, sacrificial work. And in all of it, God is doing work that matters. He is doing work in my child(ren), and He is doing work in my messiness. When He throws that dirty, smelly dog-haired maternal towel back to me, He's telling me my work is not finished yet. He's telling me His work is not finished yet.
It was God's grace.
It was a reminder.
Of where I belong. Of extending grace to my child(ren). Of messiness and kicks and in the bum. Of ministry and hard, important work.
Mamas, it's okay to take time to recover when motherhood kicks you in the bum. It's okay to want to throw your towel in. But remember, you are not alone, and you are loved. You are so very dear, and so is your child. In this season of messiness and hard work, grab onto someone's hand, and hold tight. Grab on to a reason, a reminder. You're not in this alone.
You are never in this alone.
Saturday, April 28, 2018
Sunday, April 22, 2018
Sometimes the Lesson You're Learning isn't for You
As humans we tend to be quite 'me first.' It does not help how me-centered our society has quickly become. Let's admit it--I'll go first--even as parents. Yes. Go ahead. Say it out loud, all together now!
So when a lesson comes along, naturally, we stop, drop to our knees, tilt our heads skyward, and cry out, "What am I supposed to be learning from this, God? Didn't I learn this last week? Aren't I already applying this to my life? ARE. YOU. EVEN. KIDDING. ME. RIGHT. NOW????"
Me first. Me centered.
Then it clicks. The light bulb turns on. Ohhhh. "I see what You're doing here, God!" You exchange a knowing look with the Great Father Above, click your heels, smile to yourself, and keep going on your way, tucking that little lesson away for future use.
Now you know. You understand.
Because you're going to use that lesson--oh yes, you're going to use it, alright. *wink wink, nod, nod*
Sometimes, that lesson you're in the midst of learning isn't necessarily about you. It is there for you to place in your 'go bag.' It may not be something you need your eyes opened wide to in your own life, but it will be something you might need to apply in love to someone else's life, or help that person learn and apply to her own. A mom will need to hear she is not alone in her struggle. Perhaps she needs to give the opinions of others the big old "Screw you!" She is doing the best she can. An uncaring or ignorant person will need his/her heart opened to non-judgment of the next struggling person, and instead, maybe offer an encouraging word, or better yet, offer help. It could be that friend who needs the courage to finally see the doctor, or someone who just needs a really good laugh.
Please understand I'm not talking about always getting in someone's face, but leading by example, with love. By writing like I do, by being that gentle hand on a shoulder, by being that caring face or word, by grabbing the groceries and saying, "How about if I carry these for you, or I can hold them here at the curb while you load your child and you can pull your car around?" By asking what you can do to help--by just being Jesus' hands and feet. By just showing another person that someone does care in this lonely world.
Very many times over the past 17 years, other moms have come alongside me as mentors and dear friends, teaching and helping me with lessons they've learned on my account. Did they know they were learning them for me at the time? Most likely not. It's typically a hindsight thing. I will be honest, even as I share this wisdom with others, I'm still in the position of needing to have it shared with me, and learning. And I'm ever so grateful. You know who you are!
As things have evolved and I've grown in motherhood, I've noticed a progression in recent years. It's become my turn to pay it forward. It's a joy of mine. It's a blessing. When it happens, and that hindsight kicks in, I exchange that knowing look with God and say, "Oh! You almost had me there! Nooowwww I get it!!"
Please don't give up on that lesson. There is someone who needs it, and there is someone who needs your love with it. Please be that Someone for someone.
So when a lesson comes along, naturally, we stop, drop to our knees, tilt our heads skyward, and cry out, "What am I supposed to be learning from this, God? Didn't I learn this last week? Aren't I already applying this to my life? ARE. YOU. EVEN. KIDDING. ME. RIGHT. NOW????"
Me first. Me centered.
Then it clicks. The light bulb turns on. Ohhhh. "I see what You're doing here, God!" You exchange a knowing look with the Great Father Above, click your heels, smile to yourself, and keep going on your way, tucking that little lesson away for future use.
Now you know. You understand.
Because you're going to use that lesson--oh yes, you're going to use it, alright. *wink wink, nod, nod*
Sometimes, that lesson you're in the midst of learning isn't necessarily about you. It is there for you to place in your 'go bag.' It may not be something you need your eyes opened wide to in your own life, but it will be something you might need to apply in love to someone else's life, or help that person learn and apply to her own. A mom will need to hear she is not alone in her struggle. Perhaps she needs to give the opinions of others the big old "Screw you!" She is doing the best she can. An uncaring or ignorant person will need his/her heart opened to non-judgment of the next struggling person, and instead, maybe offer an encouraging word, or better yet, offer help. It could be that friend who needs the courage to finally see the doctor, or someone who just needs a really good laugh.
Please understand I'm not talking about always getting in someone's face, but leading by example, with love. By writing like I do, by being that gentle hand on a shoulder, by being that caring face or word, by grabbing the groceries and saying, "How about if I carry these for you, or I can hold them here at the curb while you load your child and you can pull your car around?" By asking what you can do to help--by just being Jesus' hands and feet. By just showing another person that someone does care in this lonely world.
Very many times over the past 17 years, other moms have come alongside me as mentors and dear friends, teaching and helping me with lessons they've learned on my account. Did they know they were learning them for me at the time? Most likely not. It's typically a hindsight thing. I will be honest, even as I share this wisdom with others, I'm still in the position of needing to have it shared with me, and learning. And I'm ever so grateful. You know who you are!
As things have evolved and I've grown in motherhood, I've noticed a progression in recent years. It's become my turn to pay it forward. It's a joy of mine. It's a blessing. When it happens, and that hindsight kicks in, I exchange that knowing look with God and say, "Oh! You almost had me there! Nooowwww I get it!!"
Please don't give up on that lesson. There is someone who needs it, and there is someone who needs your love with it. Please be that Someone for someone.
The Private Places of Autism
Since the inception of my blog, there are many places with autism I have not gone. Some of them are dark. All of them are just deeply personal.
As the years have unfolded, I have become increasingly bolder, but still, there are many things I have chosen not to share. There are other autism parents who have emboldened me, and for the sake of general public education, and protecting my children by educating the general public, I've felt it necessary to step out a bit more.
When Noah was first diagnosed, I put a tagline at the bottom of my emails, "Ask me how you can learn more about autism!" I wanted to be a good mom to Noah, and I thought I was stepping out and being brave for him. I was eager to educate the entire world. I would have worn a billboard if possible. I'll never forget the day someone, a dear friend now, but more of just an acquaintance then, replied, saying she wanted to know more autism. I froze in front of my computer, just completely lost--when I added that tagline, I didn't actually think someone would reply. I mean, who reads those things anyway? So, big girl panties pulled up--after all, I had gotten myself into this!--I replied to my friend with our story. I couldn't believe how understanding she was. She was part of our Scout pack, and took to heart everything I told her.
I've come a long way since then. Just ask me about the billboard I wear....
When April arrived, April being Autism Awareness/Acceptance Month, I declared on Instagram to be more open in my sharing, at least for this month. I professed to go a little more in depth, and give others a more "day in the life of" peek into our lives. I decided I wouldn't hold anything back, no matter how ugly. I want others to know what autism truly is, and what it truly isn't.
A dear friend asked me, honestly curious, why I have not gone in depth before.
Well, here's the scoop--the biggest reason is my children deserve their privacy. Anything I print about Noah is now done with his permission. Avery is reaching the age where that will soon need to be a priority for him, as well. Even when myrantings musings come from my own perspective, they still need to be printed with with my children's permission. It's about privacy, and it's about courtesy and respect, even if I'm not using their names directly. My children are more than autism, and deserve to be seen as the human beings they are. Another reason is this is just our daily life. Life goes on, right? Do you detail your daily life to everyone (okay, so some people do, this is the age of social media, after all!)? Do you think to detail your actions, or do you just go about your life? We just go about our daily lives (well, except for those days I unapologetically over-gram, but anyway...). We live it, and this is just how it is. This is our normal, such as it may be to some, so I don't really think to chronicle it. I also don't want pity or sympathy--and when you talk about the dark and dirty, that's what people tend to want to give you, and many times, it's insincere (and I have a really difficult time with insincere, just putting that out there). It's just what people do. There's no reason for anyone to pity us, not even on our worst days. As I stated earlier, this is our life, and we live it. There's a reason God made my kids this way, and I've seen those reasons take shape time and time again. It makes me proud when I see my boys embrace their 'weird' so that it helps someone else. We could be the only ones who speak another person's 'language' in a disaster or missions situation, or even just in the grocery store. Noah could be the only one who understands a patient or victim on a scene he responds to. This is part of our purpose. I do my best to teach my children to stand resilient--we are not victims. Lastly, and perhaps most importantly, there are certain things only other autism parents can understand. These just aren't things you bring up during lunch at Chik-Fil-A, you know? You start losing play dates. Friends don't return texts or emails. They are afraid of your child. There are some neurotypical parents try to relate, and honestly, it sounds pathetic when they do--you just really don't want to hear it. You have to physically keep yourself from rolling your eyes. They mean well, but it just doesn't work that way. There's no way it can ever ring true. Little Johnny throwing his stuffed animal at his sister for name calling is not the same as your child repeatedly physically assaulting you because he cannot regulate his own emotions. Worse, possibly, are the parents who pass it off as "boys will be boys, he will grow out of it, nothing is wrong, here, have another glass of wine." Yeah, no. They might be trying to make you feel better, but really they are trying to make themselves feel better. If this can happen to your kid, it can happen to theirs. Oh my gosh--can it be spread through toilet seats???? A neurotypical parent may look at some of the things I have to do and call it abuse. Others would think I need a parenting class, and my kid needs a good swift kick in the a$$ (or perhaps the other way around). Someone is going to call Social Services. People are going to criticize, and much of my life is just beyond comprehension unless you live it day in and day out (for real, there are days I cannot even comprehend it, and I do live it day in and day out!). Regardless, I would open myself up to all kinds of different opinions and unsolicited advice, much of which I already receive and am growing tired of finding nice ways of saying, "I'm really glad that worked for your goldfish," so it's just best to keep my mouth shut, you know? It's a world many just cannot comprehend.
So why did I finally decide to open up more?
Because people need to see the real, tough, nitty gritty, dark parts of autism. I share the funny moments. I joke about it, I laugh. I share mostly triumphs, which is great--I firmly believe the parents who are stuck in the trenches need to see those and know these triumphs are possible. They need something to look forward to. And people who don't understand autism need to see what our kids are capable of, and understand our kids are Everyday Joes, not Rainman. But these sweet autism parents also need to know they aren't alone in the dark recesses of autism. And those who don't understand the dark places need to see a different light. They need to be not so quick to judge that child in the grocery store or the park as a brat, or the parent as an awful parent.
Bottom line: More compassion, less judgement.
There was a statistic published several years ago which stated mothers of children with autism experience stress similar to that which combat soldiers experience. I could not fully appreciate this with Noah. I will be horribly honest: I listened to stories other moms told, and thanked my lucky stars. I feel awful for that. I'm certainly much closer to this statistic with Avery, but I know there are other moms who still experience things much worse than I do. Many of my symptoms mimic PTSD. It's not just depression and anxiety; it's some days I just can't function because of last night. Some days I can let things roll, other days it can take a week or more to recover. Doctors say they want to help, they say they understand, but the truth is--they don't. So, I keep going. Some days are just about surviving to the next day.
I don't usually talk about the Herculean strength my child is capable of when his anger takes hold and he is not himself. I can't even call it a temper tantrum, because then you would think of a neurotypical child who needs to be sent to his room until he calms down. Instead, my child needs to be physically restrained, usually by me, often for up to an hour, so he cannot hurt himself or someone else. I have to wrap myself around him. As I restrain my child, he laughs, which is something he cannot control. It sounds as though he's being belligerent, and he is as he yells at me, but the laughing is something beyond his control. It's a misfire in his brain, some kind of wire that is crossed. He also tries to punch, kick, bite and pinch me, and tries to take my glasses to break them, while trying to break free from my self-made restraints. When these episodes are over, he is a completely different child within minutes, back to laughing (appropriately) and playing, as though nothing transpired. It is difficult for the rest of us to wrap our minds around, and to recover from. If I am home alone when this happens, there is no safe place for Ezra to go. He is scared and frightened, standing there, watching while I tell him gently to go watch tv or play with his toys, or check on the kitties for me--anything to get him away from the situation. I try to tell him Mommy and Avery are okay. He knows we are not. My own body bears the bruises and the burdens. My other children, household chores and my own life are often neglected because I'm busy with so many of these other autism 'duties.' Noah doesn't like bringing friends over because we are never sure when an 'episode' will occur. He is embarrassed by his younger brother's behavioral problems.
There are executive functioning problems, and sensory issues. What looks like a simple three step task for your child--something you can give him to do on his own--I have to give my children one step at a time, as I stand nearby helping them complete it. I say I don't think of my kids having that much autism, but it often rears its ugly head at the most inopportune moments. It is at those times I am reminded we are, in fact, very much an autism family. I am left trying to explain our situation to a complete stranger who remains doubtful because my kids "don't look autistic." When we make our way out for haircuts, I have to explain that my toddler isn't your usual toddler. When the stylist says, "Oh yeah, I'm used to toddlers," I have to explain it's not like that, and they still don't understand. I will tell you though, we did just find an angel named Jay, and his manager will hear nice things from me, and we'll be using him from now on. He speaks autism, and this time, I was the one who cried through the haircut, not Ezra. There are public (and private) meltdowns and temper tantrums. The people who stare.
Another friend, also an autism mom, asked why I feel the need to explain my kids at times like these. Well, it's because people want explanations. They want to know why I (kindly) demand exceptions to rules, why my children are behaving the way they do, why this, and why that. And sometimes, people are just rude and nosy. And sometimes, I'm just used to rattling off the explanation without any thought as to why I'm doing so, and without any thought as to whether or not that person actually needs or deserves such an explanation. On top of that, I've always felt that education is key, and it's my job to pave the way for my kids. I would rather answer questions, no matter how rude, than have people make assumptions about my children and others 'like them.'
I don't talk about the loneliness that autism parents often go through. No matter how hard my incredibly amazing friends try, they just cannot understand where I'm coming from. And I really do have some really beautiful, incredible and amazing friends who love me dearly and bless me. They want to help, but I don't even know what to tell them or what to ask of them. I know I have friends who would put themselves in my place during one of Avery's episodes without batting an eye. They love us both that much.
There are many dark, private places with autism as a parent. It's difficult to talk about them because they really are so private. We do our best and keep plugging along. Some days we think to ourselves that if this is our best, then we really should just call it a day. Instead, we wake up the next morning and start over, praying and hoping for a better day than the day before. We research tirelessly, we consult specialists and other parents who walk in our shoes, we grasp at straws, wanting a better life for our kids.
These, and more, are the private places of autism.
As the years have unfolded, I have become increasingly bolder, but still, there are many things I have chosen not to share. There are other autism parents who have emboldened me, and for the sake of general public education, and protecting my children by educating the general public, I've felt it necessary to step out a bit more.
When Noah was first diagnosed, I put a tagline at the bottom of my emails, "Ask me how you can learn more about autism!" I wanted to be a good mom to Noah, and I thought I was stepping out and being brave for him. I was eager to educate the entire world. I would have worn a billboard if possible. I'll never forget the day someone, a dear friend now, but more of just an acquaintance then, replied, saying she wanted to know more autism. I froze in front of my computer, just completely lost--when I added that tagline, I didn't actually think someone would reply. I mean, who reads those things anyway? So, big girl panties pulled up--after all, I had gotten myself into this!--I replied to my friend with our story. I couldn't believe how understanding she was. She was part of our Scout pack, and took to heart everything I told her.
I've come a long way since then. Just ask me about the billboard I wear....
When April arrived, April being Autism Awareness/Acceptance Month, I declared on Instagram to be more open in my sharing, at least for this month. I professed to go a little more in depth, and give others a more "day in the life of" peek into our lives. I decided I wouldn't hold anything back, no matter how ugly. I want others to know what autism truly is, and what it truly isn't.
A dear friend asked me, honestly curious, why I have not gone in depth before.
Well, here's the scoop--the biggest reason is my children deserve their privacy. Anything I print about Noah is now done with his permission. Avery is reaching the age where that will soon need to be a priority for him, as well. Even when my
So why did I finally decide to open up more?
Because people need to see the real, tough, nitty gritty, dark parts of autism. I share the funny moments. I joke about it, I laugh. I share mostly triumphs, which is great--I firmly believe the parents who are stuck in the trenches need to see those and know these triumphs are possible. They need something to look forward to. And people who don't understand autism need to see what our kids are capable of, and understand our kids are Everyday Joes, not Rainman. But these sweet autism parents also need to know they aren't alone in the dark recesses of autism. And those who don't understand the dark places need to see a different light. They need to be not so quick to judge that child in the grocery store or the park as a brat, or the parent as an awful parent.
Bottom line: More compassion, less judgement.
There was a statistic published several years ago which stated mothers of children with autism experience stress similar to that which combat soldiers experience. I could not fully appreciate this with Noah. I will be horribly honest: I listened to stories other moms told, and thanked my lucky stars. I feel awful for that. I'm certainly much closer to this statistic with Avery, but I know there are other moms who still experience things much worse than I do. Many of my symptoms mimic PTSD. It's not just depression and anxiety; it's some days I just can't function because of last night. Some days I can let things roll, other days it can take a week or more to recover. Doctors say they want to help, they say they understand, but the truth is--they don't. So, I keep going. Some days are just about surviving to the next day.
I don't usually talk about the Herculean strength my child is capable of when his anger takes hold and he is not himself. I can't even call it a temper tantrum, because then you would think of a neurotypical child who needs to be sent to his room until he calms down. Instead, my child needs to be physically restrained, usually by me, often for up to an hour, so he cannot hurt himself or someone else. I have to wrap myself around him. As I restrain my child, he laughs, which is something he cannot control. It sounds as though he's being belligerent, and he is as he yells at me, but the laughing is something beyond his control. It's a misfire in his brain, some kind of wire that is crossed. He also tries to punch, kick, bite and pinch me, and tries to take my glasses to break them, while trying to break free from my self-made restraints. When these episodes are over, he is a completely different child within minutes, back to laughing (appropriately) and playing, as though nothing transpired. It is difficult for the rest of us to wrap our minds around, and to recover from. If I am home alone when this happens, there is no safe place for Ezra to go. He is scared and frightened, standing there, watching while I tell him gently to go watch tv or play with his toys, or check on the kitties for me--anything to get him away from the situation. I try to tell him Mommy and Avery are okay. He knows we are not. My own body bears the bruises and the burdens. My other children, household chores and my own life are often neglected because I'm busy with so many of these other autism 'duties.' Noah doesn't like bringing friends over because we are never sure when an 'episode' will occur. He is embarrassed by his younger brother's behavioral problems.
There are executive functioning problems, and sensory issues. What looks like a simple three step task for your child--something you can give him to do on his own--I have to give my children one step at a time, as I stand nearby helping them complete it. I say I don't think of my kids having that much autism, but it often rears its ugly head at the most inopportune moments. It is at those times I am reminded we are, in fact, very much an autism family. I am left trying to explain our situation to a complete stranger who remains doubtful because my kids "don't look autistic." When we make our way out for haircuts, I have to explain that my toddler isn't your usual toddler. When the stylist says, "Oh yeah, I'm used to toddlers," I have to explain it's not like that, and they still don't understand. I will tell you though, we did just find an angel named Jay, and his manager will hear nice things from me, and we'll be using him from now on. He speaks autism, and this time, I was the one who cried through the haircut, not Ezra. There are public (and private) meltdowns and temper tantrums. The people who stare.
Another friend, also an autism mom, asked why I feel the need to explain my kids at times like these. Well, it's because people want explanations. They want to know why I (kindly) demand exceptions to rules, why my children are behaving the way they do, why this, and why that. And sometimes, people are just rude and nosy. And sometimes, I'm just used to rattling off the explanation without any thought as to why I'm doing so, and without any thought as to whether or not that person actually needs or deserves such an explanation. On top of that, I've always felt that education is key, and it's my job to pave the way for my kids. I would rather answer questions, no matter how rude, than have people make assumptions about my children and others 'like them.'
I don't talk about the loneliness that autism parents often go through. No matter how hard my incredibly amazing friends try, they just cannot understand where I'm coming from. And I really do have some really beautiful, incredible and amazing friends who love me dearly and bless me. They want to help, but I don't even know what to tell them or what to ask of them. I know I have friends who would put themselves in my place during one of Avery's episodes without batting an eye. They love us both that much.
There are many dark, private places with autism as a parent. It's difficult to talk about them because they really are so private. We do our best and keep plugging along. Some days we think to ourselves that if this is our best, then we really should just call it a day. Instead, we wake up the next morning and start over, praying and hoping for a better day than the day before. We research tirelessly, we consult specialists and other parents who walk in our shoes, we grasp at straws, wanting a better life for our kids.
These, and more, are the private places of autism.
Tuesday, April 10, 2018
God Has The Last Word
On the way into town this morning, we heard the radio DJ tell a story about a father who printed a prosthetic arm on a 3D printer for his little boy, after the doctors told them the little boy was too young for one. The father did the same for a little girl in the same situation. From the back of the car I heard a triumphant shout: "Doctors can suck it! God has the last word!" Avery knows that is the only appropriate time he is allowed to use the phrase 'suck it.'
I'm not a superhero. I'm just a mom slogging through the trenches, refusing to let her kids be pulled down into the quagmire that is often spoken over them.
A lot of people say to me, "I don't know how you do it," but the truth is--well, I don't know how I do it either! There's no fast and furious formula. There isn't a handbook. I just do it. I wing it. I figure it out as I go. And here's another truth: If you had to do it, you would figure it out, too. You would do it because there's no other choice. You would do it because you love the hell out of your kids, and it's your promise to them to do your best by them. You would do it because you are all they have.
I've done countless hours of research. I've emailed and cold-called complete strangers in the hopes of finding better therapies and opportunities for my kids. I've picked the brains of friends who live on the same planet we do. I've literally taught my kids how to play. I've sat on the floor of the mall, counting the timing of the escalator until my son was ready to give it a try. I've homeschooled two kids, and I know the possibility is there I might homeschool my third, to give them a boost. I have a duck living in my home because he helps one of my sons cope with life. I've never accepted "no" as an answer from a specialist or therapist or insurance company or school when it's something I knew my kids needed and would benefit from. I can't even think of all the things I've done, but what it boils down to, is doing what has to be done to give them the edge they need in life. They are square pegs in a round hole society.
Most of all, I have refused to accept what many doctors have spoken over my boys.
I've walked out of countless offices, but not before standing over the doctor, my finger pointed, reminding that doctor that his or her medical license does not give them the right to speak such death and negativity into a child's life. Statistics and research do not guarantee a child's potential. Sometimes I've spoken up this in front of my child, if I thought my child needed to hear me stand up for him. Other times, if I really needed to lay into the doctor, I've sweetly asked my child to wait for me in the hallway. My lecture usually begins with, "How dare you..." or, "Now you listen here..." Sometimes it's been through clenched teeth as my eyes burned holes into the doctor, other times I laughed incredulously, and responded in my true sarcastic, snarky fashion. When I finish my speech, I beg these doctors to remember my words with their next patient.
I've felt the sting of hot tears trying to push their way through, while repeating to myself "Keep it together, you're the mom, keep it together, you're the mom, keep it together, you're the mom," over and over in my head, blocking out whatever it is the doctor is saying, until I've got it together enough to either walk out, or speak up without crying, then walk out. I've had to leave my children in the hallway while I gather myself in the bathroom once we've left the office. I never want my kids to think they, or their 'situation' have made me cry.
Doctors have a lot of book knowledge. Yes, there are some very rare gems out there, and we have met a few. But there are some who can only quote statistics and research. They don't know anything beyond that, and don't know the human side of things. At the end of the day, some doctors don't know squat, and they certainly have no place preaching the future over a child.
Our biggest lesson, and the only one I want my kids to know in their hearts, minds and souls--is God ALWAYS has the last word. God is the only one allowed to have the last word. God is the only one who is able to speak over their lives. He is the only one with the right to speak life into into my children, into any child. God is the only authority allowed to speak into my children's lives.
Anyone else can--well, they can suck it.
I'm not a superhero. I'm just a mom slogging through the trenches, refusing to let her kids be pulled down into the quagmire that is often spoken over them.
A lot of people say to me, "I don't know how you do it," but the truth is--well, I don't know how I do it either! There's no fast and furious formula. There isn't a handbook. I just do it. I wing it. I figure it out as I go. And here's another truth: If you had to do it, you would figure it out, too. You would do it because there's no other choice. You would do it because you love the hell out of your kids, and it's your promise to them to do your best by them. You would do it because you are all they have.
I've done countless hours of research. I've emailed and cold-called complete strangers in the hopes of finding better therapies and opportunities for my kids. I've picked the brains of friends who live on the same planet we do. I've literally taught my kids how to play. I've sat on the floor of the mall, counting the timing of the escalator until my son was ready to give it a try. I've homeschooled two kids, and I know the possibility is there I might homeschool my third, to give them a boost. I have a duck living in my home because he helps one of my sons cope with life. I've never accepted "no" as an answer from a specialist or therapist or insurance company or school when it's something I knew my kids needed and would benefit from. I can't even think of all the things I've done, but what it boils down to, is doing what has to be done to give them the edge they need in life. They are square pegs in a round hole society.
Most of all, I have refused to accept what many doctors have spoken over my boys.
I've walked out of countless offices, but not before standing over the doctor, my finger pointed, reminding that doctor that his or her medical license does not give them the right to speak such death and negativity into a child's life. Statistics and research do not guarantee a child's potential. Sometimes I've spoken up this in front of my child, if I thought my child needed to hear me stand up for him. Other times, if I really needed to lay into the doctor, I've sweetly asked my child to wait for me in the hallway. My lecture usually begins with, "How dare you..." or, "Now you listen here..." Sometimes it's been through clenched teeth as my eyes burned holes into the doctor, other times I laughed incredulously, and responded in my true sarcastic, snarky fashion. When I finish my speech, I beg these doctors to remember my words with their next patient.
I've felt the sting of hot tears trying to push their way through, while repeating to myself "Keep it together, you're the mom, keep it together, you're the mom, keep it together, you're the mom," over and over in my head, blocking out whatever it is the doctor is saying, until I've got it together enough to either walk out, or speak up without crying, then walk out. I've had to leave my children in the hallway while I gather myself in the bathroom once we've left the office. I never want my kids to think they, or their 'situation' have made me cry.
Doctors have a lot of book knowledge. Yes, there are some very rare gems out there, and we have met a few. But there are some who can only quote statistics and research. They don't know anything beyond that, and don't know the human side of things. At the end of the day, some doctors don't know squat, and they certainly have no place preaching the future over a child.
Our biggest lesson, and the only one I want my kids to know in their hearts, minds and souls--is God ALWAYS has the last word. God is the only one allowed to have the last word. God is the only one who is able to speak over their lives. He is the only one with the right to speak life into into my children, into any child. God is the only authority allowed to speak into my children's lives.
Anyone else can--well, they can suck it.
Thursday, April 5, 2018
A Very Very Autism House
Monday was that day again--World Autism Awareness Day. That means it's that month again--Autism Awareness, or Acceptance, Month.
It's always Autism Day in our house. With a suspected four of us (plus one cat) on the spectrum, life is seldom boring, and anything but normal.
What IS normal, anyway????
Many people think if they've seen their cousin's uncle's goldfish's kid with autism, they've seen them all. More are beginning to understand that autism doesn't look the same in everyone. That's how I missed it in Avery, and I'm supposed to be an para-expert. I can't tell you how many times I've heard, "Well, he doesn't look autistic!" Sigh.
So, what does autism look like in our home? Autism used to look like pacing in the backyard (our version of stimming), enough that he created almost a moat around the yard. It looks like tippy toe walking. It looks like complete disorganization and fire-hazard rooms, but OCD-strict grocery store shelves. Autism looks like wordless screaming in the middle the grocery store, a restaurant or other public place that is too loud or otherwise overstimulating. It looks like out of control, bratty, shut-that-kid-up-lady behaviors to the unknowing eye. Autism looks like obsessing over a certain toy or subject or tv show, or something to the point we parents have to put our feet down, and declare moratoriums on said toys, subjects or shows or somethings. It looks like sentences, or words, repeated many times in a row. At the end of some days, it looks like utter defeat, ending in tears and complete exhaustion, knowing it all starts again at the crack of dawn again the next morning. It looks like weekly appointments with various specialists and therapists, and searching for those professionals who will believe in my kids as much as I do. Autism looks like gratitude for those who must do their jobs, but are willing to put accommodations into place for us as they do them. It looks like ten steps forward, and twenty two steps back. Sometimes, autism looks like a complete meltdown over what, on the surface looks like nothing, but started earlier that day over a tag, or an uncomfortable sock, or something similar, and has built throughout the day, then suddenly explodes over that seemingly nothing. It looks like fierce anger, crippling anxiety, and restrictive obsessive-compulsive behaviors. Sometimes, autism looks like physical violence, towards himself, or towards me. It looks like me physically restraining him with my own body until he's safe again. It looks like frustration when uninformed people judge us, and anger with general ignorance. It looks like me, exhausted from trying to explain my kids, and just plain sick of having to explain them at all. It looks like frustration with those who patronize my kids and treat them as less than they are because of a label. It looks like high intelligence and amazing humor. On our best days, it looks like introversion and social awkwardness. On our worst, autism looks like reclusiveness.
Autism looks like me, advocate, warrior, teacher, defender, protector, MOTHER BEAR.
Autism looks like them, my REASONS.
Autism does not look like pity needed, victimhood or hopelessness.
Over the past seven years, I've gone from screaming at God and pounding my fists on my steering wheel in a rage, to looking at the work He and Noah have accomplished in Noah (and our family), to not batting an eye when I approached the issue of autism concerning my younger two. And???? Your point?
It's not always easy, but this mama's got it covered.
It's a constant, daily battle, but we're up for it.
We have to be.
This is autism. This is our life.
It's always Autism Day in our house. With a suspected four of us (plus one cat) on the spectrum, life is seldom boring, and anything but normal.
What IS normal, anyway????
Many people think if they've seen their cousin's uncle's goldfish's kid with autism, they've seen them all. More are beginning to understand that autism doesn't look the same in everyone. That's how I missed it in Avery, and I'm supposed to be an para-expert. I can't tell you how many times I've heard, "Well, he doesn't look autistic!" Sigh.
So, what does autism look like in our home? Autism used to look like pacing in the backyard (our version of stimming), enough that he created almost a moat around the yard. It looks like tippy toe walking. It looks like complete disorganization and fire-hazard rooms, but OCD-strict grocery store shelves. Autism looks like wordless screaming in the middle the grocery store, a restaurant or other public place that is too loud or otherwise overstimulating. It looks like out of control, bratty, shut-that-kid-up-lady behaviors to the unknowing eye. Autism looks like obsessing over a certain toy or subject or tv show, or something to the point we parents have to put our feet down, and declare moratoriums on said toys, subjects or shows or somethings. It looks like sentences, or words, repeated many times in a row. At the end of some days, it looks like utter defeat, ending in tears and complete exhaustion, knowing it all starts again at the crack of dawn again the next morning. It looks like weekly appointments with various specialists and therapists, and searching for those professionals who will believe in my kids as much as I do. Autism looks like gratitude for those who must do their jobs, but are willing to put accommodations into place for us as they do them. It looks like ten steps forward, and twenty two steps back. Sometimes, autism looks like a complete meltdown over what, on the surface looks like nothing, but started earlier that day over a tag, or an uncomfortable sock, or something similar, and has built throughout the day, then suddenly explodes over that seemingly nothing. It looks like fierce anger, crippling anxiety, and restrictive obsessive-compulsive behaviors. Sometimes, autism looks like physical violence, towards himself, or towards me. It looks like me physically restraining him with my own body until he's safe again. It looks like frustration when uninformed people judge us, and anger with general ignorance. It looks like me, exhausted from trying to explain my kids, and just plain sick of having to explain them at all. It looks like frustration with those who patronize my kids and treat them as less than they are because of a label. It looks like high intelligence and amazing humor. On our best days, it looks like introversion and social awkwardness. On our worst, autism looks like reclusiveness.
Autism looks like me, advocate, warrior, teacher, defender, protector, MOTHER BEAR.
Autism looks like them, my REASONS.
Autism does not look like pity needed, victimhood or hopelessness.
Over the past seven years, I've gone from screaming at God and pounding my fists on my steering wheel in a rage, to looking at the work He and Noah have accomplished in Noah (and our family), to not batting an eye when I approached the issue of autism concerning my younger two. And???? Your point?
It's not always easy, but this mama's got it covered.
It's a constant, daily battle, but we're up for it.
We have to be.
This is autism. This is our life.
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