The Shovel

 

I’ve been up since 4:22am. Again. Not because this is what time I get up. Not because this is my favorite time of the morning to be up, or write. But because my body and mind seem to think it is a good time to be up, and apparently I don’t need much sleep.

I’ve wandered with Jesus since I was 15. I am 36 years old, and I can honestly say I’ve wandered more than walked. But sometimes, just sometimes, I am dragged. Much like Sadness in Inside Out, (yes that was a Disney reference), I let Joy drag me rather than getting on my own two feet and walk this crazy @#%$* out.

My son is 12 years old and he has had autism since we was 1 year old, although we didn’t find out until he was 3, and the guilt of that, the not knowing or noticing, is heavy. Every day I think of how I’ve failed him, how if I could’ve just gotten my head out of my @$#% and just looked up and seen this little boy who was suffering in his own silent hell, maybe, just maybe I could’ve done something more. But I was 24, and as if age and maturity is an excuse, I didn’t know any better. I kick myself for all the mistakes I made in my twenties, but this one takes the cake. I ruined him. I messed him up. I failed him as his mother, and as if God could made a mistake, I take on the full responsibility and guilt of that daily.

My son is now considered mild on the spectrum, which has its own set of problems. He is “too” high functioning for most assistance programs, and “too” not typical for mainstream. And the real problem is there isn’t enough for these kids that are just “in-between”. In fact, there is nothing.

I’ve struggled quietly with my son’s autism for several years now. He’s so close to being typical that I forget very often that he is just plain not. And the funny thing is, the one thing I appreciate about both of my kids is how weird they BOTH are, and how NOT typical they BOTH are. My daughter is this amazing free spirit, strong-willed, beautiful little girl who is NOTHING like you’ve ever seen before. I always say you’ve never met a four year old girl like her. But for some reason, and I know this is typical of myself, I cannot just let go of my preconceived notions of what Jalen SHOULD be and pick up what he COULD be if I just choose to let go and give up those expectations of normalcy.

I won’t lie, I have control issues, most of which I have let Jesus heal me. But with Jalen, I hang on tight, not to go along for the ride but push and force-guide him along this wandering path. It’s like I’ve carved out with well formed, picture perfect winding path, and while it is winding, it’s the path I’VE carved out for him instead of just handing him the shovel.

Over the last year and a half I’ve spent a lot of time crying over this son of mine. It is breaking my heart every time I think about him. I’ve cried to his teacher and my friend, Anna, the most. And I am so grateful for her heart and her encouragement, her prayers and her willingness to just hug me while I stand in her kitchen and cry, which is quite often I must confess.

So this is me, attempting to hand over the shovel to a son who loves Jesus with all of his heart, sings along to worship songs, and who lifts his hands in praise in children’s church. His heart is pure and he is single-minded in his love and devotion to The Savior he asked into his heart at nine years old. And sure, he is twelve and full of hormones and attitude, but I love my firstborn with all my heart. We’ve survived some tough years together, and for the longest it was just the two of us. He is an amazing big brother to his sister who is a full eight years younger than him. He still loves to play, has an amazing imagination, and gets super embarrassed even when he just sees two people kiss on TV, even though he’s kissed a number of little girls himself. He is a lady’s man, is super serious about his clothes and shoes (alarmingly serious), and moves as slow as molasses. He’s random and is rarely talking about something I understand. He loves music with a passion, wants to be a Sea World trainer when he grows up, and loves to be held and hugged. And with all these amazingly awesome qualities I still tend to focus on what he is not.

If there is one thing I’ve learned in my wanderings with Jesus it is this: He is not concerned with what you are NOT. He wants you to know what He IS instead. So everyday I will get up and choose again and again to focus on what my son IS, and not what he is NOT. I will make him believe with all his heart who he is in Jesus, and why of all mothers The Father could’ve given him, He chose me.

I am fully aware that this kid of mine has had a rough life. I’ve been right alongside him in it. But there is one thing I can be certain of: he has been loved more than he will EVER know through ALL of it.

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They Never Said This Would Be Easy


I can’t tell you how many times I sat here and wondered if Mary ever had to put up with 2-year-old Jesus teething. I’m sure he gave thanks for his teeth and didn’t send his mother into a tale spin of self-pity and wrath at his wailings.

So…the smallest one is teething. Obviously. And she’s two, so that is just a bad combination anyway.

I was recently reminded that children are a reward. The more she grows, the more she talks. The more she talks, the more I enjoy every single word, phrase, question. She is also sarcastic and already knows how to torment her brother who is eight years her senior. She is brilliant and bright and my little sunshine. She is my reward. After years of struggling to even get A word out of my son’s mouth, my reward has been Marin. Everything is easy for her. Nothing is easy for my son, Jalen. He struggles every day with Autism and some days it’s great, and some days it just sucks to be him. And me. And us. We get stuck in this rut of “why don’t you understand the words that are coming out of my mouth,” and the “I don’t understand what you are saying”, and the back and forth of that. I forget he has Autism. Looking at him you wouldn’t know. It doesn’t have a signature look. Listening to him he just sounds like a self-absorbed ten-year old. We live in the suburbs, it’s all around. Heck, even the five-year old has a newer iPhone than I do.

So, I forget. I forget that he has struggles, and that things take him SOOOO much longer to do than others. I forget because he’s mine and I’m so used to him and I expect so much and he always rises to the occasion. But on the off-chance that he doesn’t rise, just that once, I forget. I expect so much from this one little person because he always delivers.

But….this week he didn’t deliver. And I found myself disappointed. He came home with a D on his report card. I am not the parent who expects perfection. I will take B’s and C’s, if that means you are doing your very best, and that is what you come up with. But a D? That just makes me think you didn’t even care to try, let alone try your best. Every once in a while I’m slapped in the face with his Autism, and it hurts. It’s ugly and I blame myself. I mean obviously I did this to him right? In one way or another? I blame myself and throw myself a five-minute pity party. Then I remember this one thing:

 

I’m reminded that God has A LOT of faith in me, and I do not have nearly enough faith in Him. I am weak. He is strong. I am faithless. He is faithful. I am anxious and fearful, yet HE is ALWAYS there. So I pray, and I lean on Him and I trust that He made this child to bring joy and love to this otherwise cruel and unfeeling world. It will be in his own time, and in his own way, but I trust that God has destined this child for greatness. Just like Mary knew that Jesus was one day going to save the world, I have faith that Jalen is having his fair share of trials and tribulations so that when he is ready, he will make his own mark on this world.

Jalen is a gift. And children are the reward.

A Reality Check

I had a reality check a couple of weeks ago. I volunteer at our church, in the Special Needs ministry, every other Sunday. We are assigned to one specific child, based on their needs, and we “buddy” with them through every activity and make sure they are having fun, and feel included. My buddy that week was a kid my son goes to school with, so it was a regular day. I had gone into another room to swing with my buddy, and another child, an older child, came running into the room, giggling and excited with his buddy behind him. This room is normally reserved for these two specific boys for a longer amount of time because they require the most sensory time. As I turned around to see the boy who was giggling and hiding behind me, he grabbed my arm as tight as he could, digging his nails into me and shaking it back and forth. I put my hand on top of his and told him “no-no, that hurts,” gently removing his hand from my arm. He had bruised it pretty good and I even had a couple cuts from his finger nails. As I walked down the hall to find our director to get some Neosporin or a band-aid, I realized how shaken up I was and went into the bathroom for a couple of minutes to wash it off, and to cry…in private. I wasn’t crying because it hurt. I wasn’t crying because the boy had grabbed at me, or I was scared. I cried because at that moment I realized I seriously had no idea how bad, bad was. I realized that while I had never experienced more than a minute with this poor boy, his parents experienced this every day for 19 years. I felt so bad for him. I knew that this boy was in fact 19 years old, non verbal, and had been aggressive with other volunteers within the program. He wasn’t aggressive in a “I’m intentionally going to hurt you maliciously” way, but more like my dog is 60 lbs and still tries to sit in my lap because she thinks she is still a puppy way. The boy clearly did not know what he was doing. This made me sad. I couldn’t imagine being as old as I am right now and never being able to clearly speak my mind, or express to someone how I am feeling. Hell, I have problems doing that with the words God gave me anyway. My husband jokes when we watch “Eat. Pray. Love” that he needs to find me one of those “I am in Silence” buttons. Ha. Who would tell him where everything in the house is when he can’t look for it himself???

Everyone and their mother commented on my arm, and I’m pretty sure the director was worried I was going to quit. I told her, repeatedly, that I was fine, and me looking like I was gonna cry was not because of what she thought it was. I told her again later that I had realized, in that moment, that no matter how sorry I feel for myself some days, someone always has it worse than me. No matter how many times the principal calls my home, no matter how many schools my son has been through, no matter how many daycares have turned him away, no matter how many issues we’ve had to face as a result of his Autism, there is always someone facing, and living in, a constant storm of unimaginable proportions.

I find so often that people are angry. I’ve said to myself lately, what the hell is everyone so angry about?!? That car pulled out in front of you? Oh, maybe she was dealing with her horrible children and forgot to look. Get over it. A guy leaves his cart in the middle of the aisle at the grocery store? He’s a man. Enough said. Your kid isn’t getting enough “play time” at his soccer game? He’s not going pro. Calm yourself.

I guess I just don’t see the point. Let go, Let God. Maybe it is a result of getting older, but I’m learning quickly that getting angry is never good for you or the other person, and some things you want to change will never change. Trust God will give you the strength you need to get through these trials, and know you’ll be better for it in the long run. Someone is always facing something worse than you.

Life is a Battlefield

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I’ve taken a long time to write on this subject. In fact it’s been in my mind since the December school shooting, but I’ve chosen to choose my words carefully. Even my brother in law has asked why I haven’t spoken about the topic, and I honestly didn’t feel like hurting anyone’s feelings, or sparking a major debate on the subject. But then I came to the realization that I really don’t care if I offend anyone. I’m just not the type of person to take on a challenge lying down, and if this means going to “war” for my son, then so be it. I’m battle ready.
Most people have the privilege of being oblivious, of being ignorant, or of simply not caring enough about something in order to do anything about it. This has apparently never been my lot in life. I’ve always had challenges placed before me. I’ve always had to travel down that path Robert Frost so fondly wrote about. I’ve lived with mental instability in my home for years. In fact, I feel like a expert on the topic most days. If my past relationships have taught me anything, it is this. And as if to add insult to injury, I was given the challenge to raise a special needs child. What doesn’t kill us makes us stronger…supposedly. Either way, my hair is turning grey at a rapid rate.
There has to be nothing worse in this world than the good ole “media spin” on anything and everything. After the school shooting in December, suddenly, children with Autism Spectrum Disorders became public enemy number one. Although I’ve never known a child on the spectrum to be violent, in fact, usually the opposite, I tossed this aside as just another media spin in order to place blame on something. The second worst thing in this world is the blame game. Lets all point the finger. Lets blame everyone else, and never look at ourselves because it is never our own fault, it is always someone else’s. Sometimes I feel like I live in the age of elementary school yards. ‘It’s her fault. She pushed me. He made me do it. It’s all his fault.’
Lets take in to account that tragedies happen. This is a fact of life. There is no way to control or prevent everything. The world has been full of chaos since Eve ate that damn apple. I sometimes feel like its only gotten worse. People have made the conscience choice to care less and less about one another, even their own children. Child abuse is on the rise with the decline of marriage. Leaving disease and mental illness completely out of the discussion, it’s still a sad state of affairs when children are murdered in order to curb responsibility. We send money and host entire charity events centered around saving the children of the world, but ignore our own or leave them for a nanny to raise. Have we become that spoiled? That self centered? That busy, that we forget to have a relationship with our children who are starved for our attention.
I saw a quote on Pinterest that I’ve tried to remind myself of daily. It said, “if we don’t listen to our children about the little things, they won’t want to share the big things with us later on, when it really matters.” I try to make an effort to listen to my son’s ramblings, even when he thinks I’m not listening. Sometimes it’s second nature to give a generic response, but maybe that’s the one thing he is waiting to hear.
My son is not mentally ill. He is a little boy with a socially impairing and speech delaying disorder. He is not crazy, or mean hearted. He has the biggest heart I’ve ever seen and is nice to others even when they are not nice to him. He’s recently encountered a bully at his new school. I try not to judge this child, since I know nothing about his situation, but I’m accustomed to expecting this. Somehow I feel like my son’s feelings on the situation have changed though. I don’t think he wants to be nice to this boy anymore. He’s exhausted all of his means. He’s tried the nice approach, killing him with kindness. He’s tried to ignore him. As much as we push the tattle-tale approach on him, it just won’t take. So now we are being called in to talk to the principal about the situation.
I fervently retract my previous comment about ignorance being bliss. I’d hate to be ignorant in this day and age. I’d hate to have the wool pulled over my eyes only to be shocked at what the world has come to while I was playing hide and seek inside my coat. While I am passionately against watching the news every night, I still realize I live in the real world, and it sucks. It sucks that my son can’t just be himself without all these damn guidelines. I’ve said it before, my son doesn’t go to school every morning, he goes to a prison for small people. Between the political correctness and the social sensitivities, I seriously want to pull my hair out. Their protocols, their rules, their complete and utter bullshit. Public school isn’t free. It’s cost is the pile of crap you have to deal with when they viciously try to shove your child into their crappy little box they expect all children to fit into. My child has broken their box. Officially. Unofficially, he’s become their target. And so has every other child who falls under a category of special needs or mental illness. These kids don’t chose to be this way, and yet they are judged, punished, and stereotyped. The latest stereotype: madman, lone gunman, psychopath. Because of one heavily publicized school shooting, and a million people’s ignorance and misconceptions, one in every seventy children will be assumed dangerous. Let us please remember what happens when we assume, and I don’t know about you, but I don’t like to be made to be an ass.

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This Could Be the Start of Something Good….I Hope!

They say “Ignorance is Bliss.” This I know to be true. I sometimes wish I didn’t “know better”, or at least I was ignorant to many of the plaguing facts of life that keep me up at night. We recently had a new, little, perfect addition to our family, Miss Marin Rose Olson. She will be two months old on Saturday, and I can see how beautiful and perfect she is, and how much I would do to protect her. She is the love of our lives!

Today was a good day. Today the government held a Congressional hearing to address the issue of the rising rate in Autism. Now usually I wouldn’t count this as anything to even get excited about, but luckily they did decide to air it on C-Span and I got to witness what went on. I was worried it would be a courteous, ‘Oh excuse me, please’, use your good manners kind of bullcrap. It was a good day today because it was NOT. Two witnesses were there to represent the government agencies in charge of dealing with this epidemic, one from the National Institute of Health (NIH), and the other from the Center for Disease Control (CDC). Their were other advocates there, including the co-founder of Autism Speaks, (not always a fan favorite), and SafeMinds and Autism Society. The two who were grilled the most were the man from the NIH and the woman from the CDC, and thank God for that. Not only were their members of congress who sit on this committee, but the room was filled with parents and some children dealing with this issue on a daily basis. An amazing man in the house of representatives by the name of Dan Burton, who unfortunately is retiring at year-end, spoke out very candidly about the mercury that is in our children’s vaccines and the effects mercury has on the brain. He not only was passionate, but has fought for years as this committee’s chairman to even get a hearing on the issue. He was knowledgable, and the other representatives truly looked up to him and respected his opinion.

Even better, all the representatives were on the same page of this issue. Both Democrat and Republican stood side by side on OUR side of this issue. They said, more than once, that the “researchers” need to invest their money and time in talking to US, the families affected by Autism. One congressman even asked if he allocated the 4 billion dollars the government gave to defense to the CDC for further investigation and research into how to STOP this epidemic, what would they do with it? Well, the CDC is VERY good at patting themselves on the back about all their funding in tracking and educating and early detection, but still avoiding the question of how to prevent it in the first place. The doctor who represented the CDC boasted about how mercury WAS removed from vaccines as of 2001, but failed to complete the factual statement that it was only removed from the single dose vaccines. Meanwhile when you take your child to the pediatrician they only offer the four-in-one elixir and tell you that you’d be hard pressed to find the single doses. In other words, take this mercury and deal with it.

A representative from New York, or maybe it was New Jersey, pushed the issue of this being the fastest growing epidemic he’s ever heard of, and if this was in fact the only disease the CDC has seen with these kinds of growths. The doctor from the CDC of course evaded the question and gave herself a back-handed compliment, aimed to slap us in the face mostly, by saying that the reason the numbers were growing in this area is because of all the ways they’ve improved detection of the disease. Look at us! We are so wonderful! We not only can detect your child’s autism earlier and better, but we are also going to expand our research in how to move forward and treat it! (Cough, cough) How about you work on making those number go down and finding what causes it first? Ever heard of Preventative medicine??? Oh no, of course not. We live in the USA, land of a thousands way to cure something with a pill! I’m sure they’ll come up with a vaccine for Autism and pat themselves on the back when we all grow a third arm from it and they shrug their shoulders saying how there is no pleasing us!

I remember when Jalen was about one year old. I was sitting in an airport, waiting to board to see the fam in Florida. There was a commercial from Autism Speaks stating that 1 in 150 children were affected by autism. In 2009 that number grew to 1 in 110. The official numbers this year are 1 in 88, and the likelihood in boys was now five times more than in girls. Epidemic? As one congressman said, no, not epidemic. Crisis. The CDC said the only other Pervasive Developmental disorder that has grown this quickly is ADHD, although no one mentioned how childhood diabetes and cancers is on the rise in the last 12 years as well.

I have to commend the members of congress that sat on this board, and trust me that doesn’t come lightly. I am the person who denounces that we have any sign of a good government, and has lost all faith in everything they say and/or do. Today, I was encouraged. I saw passionate, hard-working, determined individuals. I saw a glimmer of what I hope is change to come. The movies always portrayed the end of the world as a zombie apocalypse, killing off the human race in a plague. Believe me, there is a plague among us. The only difference is it’s not turning us into zombies, it’s turning our children into them. I hate to use that analogy, because it seems so harsh. But just to give you a glimpse of what it is like to see your child perfect and happy and thriving, and then having that light go out. It really is just as terrifying as they show in the movies.

Granted, I am blessed to have a child that has come out of the darkness, and is high-functioning in many aspects. We are very blessed that we can afford his therapies and supplements. It’s been said Autism is the rich man’s disease. It has to be. I don’t know anyone who is in a financially difficult situation that could survive this life and feel for everyone that has to and does. I know I am not in the worst situation BY FAR. I try to remind myself of that every day, and I tell my friends often ‘It could be worse’. Around the holidays we see more of the St Jude’s commercials, ending with a very important reminder: Give thanks for the healthy kids in your life, and give to the ones that are not. It’s one of my favorite things to give thanks for, and I do it every morning. I’d like it to be my turn to give to the ones that are not. Dan Burton, you are officially my hero! I hope they can carry on your legacy to make the changes you fought so hard to bring to light today. Job well done.

A Side of Controversy with your Coffee

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So Here’s My Number, and Call Me Crazy

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You’d Have to be Crazy to….

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