How Do I Do It All?
Ever have one of those weeks you know only Super Woman could actually accomplish everything on the To Do list? Sure you have. We all have. Last week was one of those weeks for me. Add to the appearance of symbolic equations on my calendar one phone call from the school to alert me of a sick child and multiple text messages from the teacher of another child asking for medicine and you have an idea of where I found myself Thursday afternoon.
Thankfully it was my husband’s school at which I was subbing when the sick call came, so we were able to compare schedules to figure out how best to handle the situation. An hour later, I was home with two somewhat sick kiddos. Neither was in a snuggling mood, so I set off on the next project.
My sub plans for Friday fell through with the addition of sick kid #1, allowing a bit of time to catch up on some things at home because oh my word, he was fine by morning!
I found myself in a conversation with a mentor discussing whether or not I actually can do it all. Let me assure you, the answer is, “No.” Simply put, no one can. But I think we all do a pretty good job of masquerading that fact.
In the last few months, I’ve had three different conversations with ladies of whom I am particularly close. Though they are each younger than me, I look up to all three of them not because of the great and wonderful things they do, but because of who they are. Each one of them successful in their own lives, but each one of them dealing with some stuff life has thrown at them lately. Though they have been an inspiration to me at various points in my life, each of them were battling their own self-doubts; comparing themselves to what they see in others.
Friends, it is important to realize that what we see in others is our perception. It is only the surface. We know not what battles they fight each and every day. We know not what lies beneath the surface. We know what we see. We know what we read on Facebook, Twitter, and other social media sites. It is so very important to realize that when we begin that awful comparison game between us and them, that we are comparing our bloopers roll (the stark realities of our lives) with their highlights reels (only the portion they choose to share). We are each created in our Father’s image. We each have purpose in Him. We may not feel we are living the dream or anything even close to what we had imagined our lives would be, but we are living in His plan, His time, His purpose.
And yet, I still get the question, “But how do you do it all?”
It’s very simple. I don’t. I don’t do it all. I don’t do nearly even half of all. But I do what I can knowing God’s got this.
For those who want the nitty gritty, we have a master calendar on the wall. I used to use a flip type calendar, but we flipped it back and forth so much the nail came out of the wall, so now all 12 months are taped on the wall. That’s right, taped right to the wall. (How’s that for a blooper’s reel?) It’s a chic preK handprint calendar, but I’ll tell you what, nothing makes me smile bigger than seeing the pride in our little girl’s eyes when she sees me pouring over the Christmas gift she so lovingly crafted for us.
This wall calendar, it’s a mess, but it works for me. Certain areas of our lives have their own color. My sub days and photography shoots are in green. The kids’ play practices are highlighted in orange. Everything else is in black. It’s okay if it doesn’t make sense to you, it works for me.
The problem is my husband isn’t so much a calendar on the wall kind of guy. He’s more the let’s use technology to our advantage and put everything on our handheld devices kind of guy. I am not the tech savvy wife I’m guessing he may have hoped for in his younger years, but he has looked past it and we have remained happily married for nearly 18 years now. And I have to admit, I don’t carry the wall calendar around in my pocket, so technology definitely has its advantages.
There are many different calendaring apps available for android and i-devices, but we use the standard one and it works like a charm, as long as someone remembers to put everything the kids have going into it. (Yes, that would be me and yes, I’m getting better.)
How do I do it all? That’s the big one right there: having it all laid out in front of me. Equally important, recognizing when I can’t do it all by myself and asking for help. The reality is there are seven of us, five of whom cannot legally drive, yet often are the cause of running here, there, and yonder.
Along the way, I have met and become friends with parents of my children’s friends. These people are invaluable just for the sake of friendship and camaraderie and realizing you’re not completely losing your mind. Add to the reality that your children are in three different school buildings in two different towns and rehearsals and basketball practices, of course, are at the north campus 13 miles from home and those friends become your lifeline to getting everyone where they need to be.
When I answer, “I don’t do it all.” I need you to understand, I’m not playing the martyr here. I really don’t do it all. My house is not in company condition every day, or realistically any day. I am behind in communications most days. Heck, if we’re being honest here, if you didn’t get a Christmas card from us this year, don’t be hurt, you aren’t the only ones. The vast majority of them are still sitting right here on the desk, right beside me, waiting for someone, anyone, to address them for me.
The laundry is never completely done. Even when the washing and drying are caught up, it’s not put away. I distinctly remember telling Chris when the twins were babies that his clothes were clean. They weren’t put away, but they were clean and as long as I could say that, I felt like I hadn’t totally lost the battle. That was 11 years and two kids ago and I am still living by that motto.
I grew up in a home that was never cluttered and never dirty. I don’t ever remember seeing any dust bunnies, much less anything even remotely resembling the full grow dirt rabbits that have taken residence under our furniture. Most nights, we set the table out of the dishwasher because those dishes are clean so we may as well use them as opposed to putting them away just to get different ones out.
Many things about our home are different than the way we grew up, and that’s okay. Neither is inherently right or wrong, just different and we’ve had to become okay with that. We have a large, busy family, and as such, I’ve had to let go of some things that still make me cringe if I don’t get to them before our parents visit just because I know it’s not how we were raised. But we are a family of seven, not four. We are 13 miles from our son’s school, not three. We are a spectrum family, not a neurotypical one. So, yes, sometimes we leave a mess so we can sit to hold a crying child for upwards of an hour because the movie he wants to watch is back at the library. Sometimes, we leave a chore for tomorrow because today is the day we are all at home and it’s our only chance to be together all week, or perhaps today is the day Ben wants to play with us and we just don’t know when we’ll get that chance again. Sometimes, we sing and dance and jump and (gasp) run in the house because our spectrum boy needs a sensory outlet for his energy and it’s just too cold or muddy for him outside. Sometimes I leave dirty dishes on the counter because darn it, I’m just plain beat. If it’s been an autism day (a really hard, loud, challenging day) I feel like it’s been a week inside 24 hours and I just need to rest. What I’ve learned through all of this is that it’s okay.
It’s okay if my house isn’t in perfect order. It’s okay if I need to call on friends for rides for my kids because I can’t fit everything in one day or even just because Ben needs to have some down time at home and I can’t leave him here alone. It’s okay if I can’t always see God’s purpose, I can trust in Him and bask in the peace His presence gives me.
I Am Autism
I may take some heat over this from the autism community, but the question has been raised and if we’re going to be open and honest about our lives on the spectrum, I feel I need to be honest here as well.
Before you comment on this, please remember, this documents our experiences. It may be vastly different from yours. This forum is established to share our experiences and offer hope and encouragement to those on the spectrum and a glimpse into our lives to those not on the spectrum. This is a place for positive encouragement and the exchange of ideas in a productive manner. Any and all condescending remarks will be deleted. This is not a debate forum, but rather a place for us to share about our experiences.
That said… this is my take on I Am Autism.
Spring is around the corner. Really, it is. And as such, most runners I know are filling their calendars with runs for causes in which they believe and anything else they can fit in.
You may recall reading about our experiences last fall in St. Louis at The Color Run. We rallied a team of family and friends who ran for our boy. The team, “Color Me BENTON” was made up of some of the finest individuals you could ever hope to know. These people love deeper than most will ever know, smile bigger, laugh harder and love stronger than we could have ever hoped for. They embraced us and our son in a way we couldn’t have ever dreamed, the same as many of you have.
St. Louis will play host to The Color Run benefiting Autism Speaks again in April and several Color Me BENTON team members have asked if we’d be making the trip again. Unfortunately, we have a conflict with the date and are unable to attend.
As much as we LOVED our experience last year and whole-heartedly supported Autism Speaks and all they seemed to be doing to support families like ours, I have since learned a great deal about the organization. Sadly, the vast majority of funds raised goes to paying salaries rather than helping the families they claim to support. There is absolutely no representation of autistic adults on their board and even the one autistic employee identified has since left the organization because despite their catch phrase of “Autism Speaks, It’s Time to Listen” it seems they will not, at least not to him or to any of the families who have tried to speak with the company about their children. And, this is perhaps the most disturbing point in all this mess: the founders of the organization did so in hopes of helping their daughter cope with her son’s diagnosis. Yet, they put together a call to action on Washington in hopes of garnering support from our politicians. Sounds noble, right? I found the call to action online today and am appalled at what I read.
True, it starts innocent enough, “If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do? We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made. We’d leave no stone unturned. Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”
It’s what followed that turned my stomach.
“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
“These families are not living.
“They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
“This is autism.
“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
“This is autism.”
While I realize that there are a great many cases where the fears and frustrations mentioned are a reality, I feel we cannot deny the millions of families who don’t live like this.
Another campaign they put together makes the claims, among others, that “I am autism…If you are happily married, I will make sure your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain. I don’t sleep, so I will make sure you don’t either. I will make it virtually impossible for your family to attend temple, birthday parties, a public park without a struggle, without embarrassment, without pain. You have no cure for me…your neighbors are happier to pretend I don’t exist until of course, it’s their child…I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry wondering who will take care of my child after you die. And the truth is, I am still winning. And you are scared, and you should be.”
As a parent of one with autism, I am beyond myself about this. However, if you can stomach your way through the first half of the campaign, you will catch the response:
“And to autism, I say, ‘I am a father, mother, sister, brother, grandparent. We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated. We will not be intimidated by you, nor will the love and strength of my community. I am a parent riding towards you. You can push me off this horse time and time again, but I will get up, climb back on and ride on with the message, ‘Autism, you forget who we are. You forget who you are dealing with. You forget the spirit mothers, and daughters, and fathers, and sons…we are coming together in all climates. We call on all faiths. We search with technology…and a growing awareness you never anticipated. We have had challenges, but we are our best when overcoming them. We speak the only language that matters, Love for our children. Our capacity for love is greater than your capacity to overwhelm.
“Autism is naïve. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak that we cannot hear them. That is your weakness. You think because my child lives behind a wall that I am afraid to knock it down with my bare hands. You have not properly been introduced to this community of parents, of siblings, of friends, school teachers, therapists, pediatricians, and scientists. Autism, if you are not scared you should be. When you came for my child, you came for me. Autism, are you listening?”
So where does all this leave us with participating in an event that supports Autism Speaks? Honestly, that’s a tough call to make. But, here’s the way I see it: research is research. If we are hoping to find the cause and develop treatments and therapies to help our son and others like him (Notice I said “help” not “cure”.) then I have to believe that research is good. I may not agree with all the opinions of those doing the research, but if research will help, then research is good.
In all my 40+ years, I have yet to find any one person with whom I agree 100%, therefore, I don’t think it’s fair to assume that I’m going to agree 100% with any company or organization. I don’t agree with their scare tactics. I don’t agree that autism needs a cure. Autism is so much a part of who our son is, I honestly can’t imagine him without it. We, as a family, have been granted so many blessings due to his autism. We appreciate the little things more. We laugh so hard we cry. We have been brought together on a level most families will never know. True, we have some very, very difficult days, but our lives are wonderfully blessed by this little man who put us on the spectrum. We work every day to help him to grow and develop. That is our honor as his family. Therapy, time and effort, and lots of it all working together have brought great progress for him. It is truly a blessing to hear one of our neurotypical kids say things like I heard earlier tonight, “Mom, I think Ben is doing really great. He’s come a really long way lately.”
Amen, Buddy. Amen.
For us and our family, this is autism.
The happy, smiling little guy in the front row, he is our autism, and we are incredibly blessed for it and him.
Photo Credit: Spangler Photography
THANK YOU
I’ve come in contact with some pretty amazing people both on and off the spectrum since we began this adventure. As is common with the times, I’ve become Facebook friends and kept in touch with other parents we’ve met along the way. I occasionally see posts thanking other kids or other kids’ parents for the kind way they treated their child.
In the beginning, this made me smile because I know how truly grateful the parent is. I’m also encouraged that there are kids out there who see past the quirks and get to know our kids.
Then, I started getting mad when I would see posts like that thinking that our special needs kids are being degraded every time a post like that was made as if somehow the friendship alone wasn’t good enough, rewarding enough on its own to be warranted.
I think perhaps it’s all part of that grieving process I mentioned last week. Like it or not, perhaps I’m still going through the process of accepting our spot on the spectrum.
Perhaps I’ve come full circle, or at least close, as I’ve found myself thinking through all of this lately and I’m finding myself at a different place, yet again. Today I’m thinking what a better place this big old world of ours would be if we all said, “Thank you.” more. Thank you for being my friend. Thank you for being the kind of friend who goes the extra mile. Thank you for being the one who walks in when the whole rest of the world walks out. Thank you for loving me for who I am, not for who you want me to be or who you think I can become, but just for who I am. Thank you. From the bottom of our hearts, thank you.
Autism Is Not a Parenting Fail
I don’t know a single parent who hasn’t ever felt the pangs of earning the self-proclaimed “Parent of the Year” award, except maybe the one who has just become a first-time parent. We all say and do things we wish we could take back a millisecond after the occurrence. We’re human and it happens.
When your child lives with an ongoing condition, whether it be an illness, disease, or disorder, there will come a time that you question yourself as to if there is anything you did to cause this or anything you could have done to prevent it. It’s simply not a question of if you will question yourself, but rather when. Even as ridiculous as it may seem that you could have done something to cause your child a struggle, you will still ask the question, “What if?”
Our days are not all horrible or all happy, but for the most part, we have a pretty fantastic joy-filled family life. Yet, there are those days which seem to host more struggles than triumphs and I start to wonder The W’s: What? Why? When? Why? Yes, I know I did “Why?” twice. In the beginning, I asked “Why?” nearly every time I turned around. There just wasn’t ever an answer that made me stop wondering. I think it’s all part of the process.
I would never call our diagnosis a tragedy because our son was the same amazing young man we loved to the moon and back on the way home from the clinic as he was on the way there that morning. No label can change who he is or the deep, unexplainable love we have for him. However, it was the beginning of a grieving process. One in which we had to let go of some of the preconceived expectations of how life would be based on our experiences with his three older siblings. In that instant, as much as everything we felt for and about him stayed the same, everything changed. We no longer knew he would be among the top of his class academically, or that he would love to sing and dance and act, or that he would amaze us with his reading abilities or fill our home with laughter with his facial expressions and sometimes uncontrollable laughter. Of course, none of these are guarantees. We did not KNOW these things, but rather anticipated, even expected them because his older siblings had all done pretty much the same to a certain degree.
But based on his siblings, we, or at least I, anticipated he’d be reading by kindergarten (He was not.); he’d be a natural on stage (He is not as naturally inclined to enjoying the bright lights as his siblings.); he’d be the top of his class (He’s up there, but has a tremendous team working to ensure he can grow and develop and hopefully someday close the gap between him and his peers.); and that he’d keep us in stitches with his sense of humor, just as his brothers had, and yet, he does.
Once I began to realize and accept that a label will not and cannot change who he is, I really began to move past the, “Why?” and onto the “What?” What is autism? What does it mean for him? For us? What can we do to help him? What now? And of course, “How?” How can we possibly help our son deal with a disorder we don’t even understand? Again, Easter Seals, support from staff there, and seeing that we were not alone in this made all the difference in the world right from the beginning.
I’ve heard it said that everything in life will somehow come around full circle. It’s so interesting to me that here we are, not even two years into knowing we are living on the spectrum, and people are already connecting us with friends of theirs whose children have recently been diagnosed. It’s one of those clubs you never really wanted to belong to, but once you’re in, you’re in for life. And you know there’s no way you could make it through alone, so even though you may not really know these people, professionals who are helping you with your child, you look at them as family because my word, where would you be without them? And other parents, those who make connection with you through mutual friends, the ones you’ve never actually met before, but you could stay up half the night in an online conversation because they get it. They know exactly what you are going through because they’ve been there. They know the grief, but they are farther along, so they also know the joys and the blessings amidst the heartaches and you hold onto the hope that if you can just make it through another day, another week, another month, that you, too, will someday be there, where they are, in the happy place where children are making progress, and parents can once again sleep at night knowing that their child will be okay. No, they’ll be great. Expectations and dreams may change, but there are still expectations and dreams, and they are just as important and exciting.
You see, autism is not a parenting fail. It is a challenge, but one that you can rise to and with a lot of work, you, your child, and your family as a whole can overcome. My mom shared the most precious clip with me this week:
Autism Is Not a Parenting Fail
You’ve done nothing wrong. You didn’t cause this. You haven’t failed your child. You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You’ll need more patience and time. Your child will have intense emotions and needs. But, he’ll also have intense curiosity, drive, determination, desire, persistence, and individuality. What you’ll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.
A happy and fulfilling life? Sounds a lot like success to me!
19 Hard Things You Need To Do To Be Successful
There is so much truth in here. It’s not necessarily intended to be spectrum related, but doggone it, it’s life and that’s our life, so really, it is. And I love it.
thespectrumscene 