The Day The Tears Showed Up

The Monster House sends love and prayers to Boston

Today, I have a post up on Special Happens, (I'll wait on ya, so you can know what I'm referencing, if you want to click over and read before you continue here.) because I specifically did not want my monsters to see it here. I don't let them watch the coverage in Boston on CNN, and I won't let them read the post I wrote for SH. Yet, as I listen to the monsterlettes play in the other room with #1, I feel the need to write a little more. I'm still... just too raw.

I'm still wondering. And I'm still reflecting. And today...today is the day the tears showed up. As I listen to the monsterlettes, I cry. I cry and I ache for the family that lost their son. I ache for the families that lost their daughters. I have vivid video in my head of the mother, sobbing as she tried to have a press conference, trying to tell the world about her daughter. And the only thing she said that I can remember with clarity is, "This doesn't make any sense!"

She said this through sobs that wracked her body, the anguish apparent, her soul screaming because her baby was taken from her with the type of violence that no one understands. And the tears keep coming.

I'm just a small town Momma with a mouth way too big for my own good. And that's okay. But the truth remains. I am scared for my monsters. I am terrified to know that my monsters are growing up in a world  where children are shot and killed at school, and bombs go off at a family event. I am horrified that I am having to create explanations that my little monsters will understand, for things that even adults don't understand.

Early yesterday morning, by accident, #5 saw coverage of a bomb dog working. He wanted to know what was going on. I had to think fast. So I did. "Well! Did you know that even dogs are superheroes sometimes? There are special dogs with super powers that work with policemen and firemen and other heroes for our country, and they can actually *smell*  bombs or drugs or other bad things and show their human partners where to find the bad stuff! How cool is that! So, that dog you see? He's showing people how he does his job!" #5 was properly awed and half whispered, "Cooooool!"

And I hated every minute of it.  I had to explain a bomb dog to my 7 year old. My seven. year. old. I could go into the inevitable comparisons now, with the "when I was 7, I was only traumatized by the fact that my cousins had all the Strawberry Shortcake figures and I had none!". But I won't. Because the fact of the matter is.. there is no comparison.

I don't know how to deal with this. I just don't. Give me an autism meltdown. Give me a sensory overload. Give me an allergic reaction. Give me a significantly overtired 4 year old that wants to eat ice cream for dinner. Give me a poop-splosion. Give me...anything... instead of having to explain what a bomb dog is to my seven year old son. Granted, he thought this was some nifty televised show and tell.  But that's not the point.

There was another 7 year old. He put it better in four words than I can in four thousand. "No more hurting people". And that's all that needs to be said, though the tears are flowing again. Now, we just need everyone to.... listen to the four words and take them to heart.

When Autism Makes Me Sad

Happy Monday, y'all! Today is full of the awesome for a bunch of reasons. Reason the first: there's actually a post today! This is progress, people! Reason the second: this is a very, very special guest post. Show the love, y'all. I mean comments. We need lots and tons and gobs and gaboodles of comment love for this Momma. Seriously.

As you know, I do not edit guest posts for content. This is so the voice of the author comes across, and the piece remains their own. I am so flattered, and honored that Tracy asked me to help her out by posting this. I know you'll love her as much as I do. And, if this piece really speaks to you, and you'd like to connect with Tracy on twitter, follow the link in her bio at the end of her post.

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Recently I read a post that I have not been able to stop thinking about since. It was written by Jill over at Yeah. Good Times, and you can read it here. I read it once and was really moved. I felt her pain. A little later I read it again, this time out loud and to my husband. When I said the words out loud, they resonated a little deeper and I started to choke up as I read them. After I finished I looked at him, and we both had tears in our eyes. It was a brilliant analogy to how Autism can make you feel as a parent. As with other moms who have children with Autism, I worry. A lot. My son is only 4 and I worry about him getting bullied in high school. Right now I can protect him, but that won’t last forever. Jill’s words made me feel sad, and made me think a lot about what my responsibility is as an Autism parent.

I read a lot of negative stuff on Twitter and in different blogs that talk about how much they hate Autism and even how resentful they are at their children sometimes for how they affect their life. I have read a couple of rants where parents are basically telling all their friends and family off because they couldn’t possibly understand how hard their life is. I can’t comprehend that. When Autism is kicking my butt, I go to my online friends. The moms and dad there are the ones who know exactly what I’m saying. They live it too. They know what to say and what not to say, and it provides comfort knowing they truly know what I’m going through. However, I would never demoralize my family and friends by telling them they just don’t get it. The truth is, they probably don’t get it. They don’t understand all the nuances of Autism, but they are there if I need something and more importantly, they love and support my son. I also refuse to endlessly talk about how much Autism sucks. Don’t get me wrong, I’m not saying I’m happy that my son has Autism. It has been a challenging road and it will always be difficult. However, I also don’t spend time wondering how he would be if he didn’t have Autism. Where is that going to get me? That is a question that can never be answered, so why waste a single moment thinking about it? I prefer to spend my energy trying to do all I can to help my son. So I read, I make phone calls, I research, I ask questions, I ask more questions, and I get stuff done. As my son was getting prepared to start ABA therapy a couple of weeks ago (after months of classes, phone calls and red tape), my husband commented to me that he had no doubt that our son’s life would be so much better, simply because I was his mom. It was his way of thanking me for all the effort I put forth, and it meant the world to me.

There are definitely days that I get sad thinking about the things my son won’t experience. Sometimes we have to say ‘thanks, but no thanks’ in response to party invitations. The stress of an unknown environment is sometimes too much for children with Autism. The stress can lead to a meltdown which most people see as a tantrum. They don’t understand the difference, and all they do is judge. Last year for Halloween we waited in line at the pumpkin patch to go on the train. He loves trains. Once he was on the train, I knew he would smile and laugh and say ‘wheeeeeee!’ But that didn’t happen. We couldn’t get on the train. Waiting in line on this particular day was over stimulating. So, I carried him out of line crying, kicking and screaming. My mom went and asked for a refund. Everyone stared at us all the way to the car. I know what they were thinking. Once he was safely in his car seat, I started to cry. I wanted to go back and explain to all of them that it’s not what they’re thinking, he’s not a spoiled brat, and as parents they should not be so judgmental. But if they’re going to judge us in the first place, they’re certainly not going to be open to hearing me out. Instead, we left with our tails between our legs. It’s so frustrating to know that he would have loved the train ride once we got on, but for whatever reason the line was too much that day. However, I can’t ask him why he’s upset because he doesn’t understand how to answer. I can’t explain to him that once we wait in line and sit on the train he would love it, because that doesn’t mean anything to him.

This past week I have been struggling with finding out the sad truth about an organization that I formally supported. When my son was first diagnosed, it was the first place I turned. I wanted help and I wanted answers. An Autism diagnosis changes your life in a second. Getting support and knowledge about the journey is a necessity. However, I can’t worry now about what caused his Autism, and I don’t want him ‘cured.’ I want him to receive the help, therapy and guidance he needs to be the best person he can be. I want him to grow up proud of who he is. I want him to be one of those teenagers/adults with Autism that people know because they make a difference to this community. I want him to learn how to process and express his feelings. These are my new dreams for him. I want to support organizations that want to see my son achieve these dreams as well.

There are times when my heart aches because my son doesn’t want a hug, can’t tell me about his day, won’t want to play with me, can’t tell me what he wants to do, where he wants to go or when he is hungry. Some days he is perfectly happy and then will cry and struggle for no apparent reason and he can’t tell me why. There are days I want to take him to an amusement park or the zoo and want him to enjoy it, knowing that he can’t. I want him to be willing to try a new food and tell me whether he likes it or not. I want him to come home from school and tell me about all the cool things that he did that day. We’ve never had a conversation like that. These are the times that Autism makes me sad.

Luckily for me, these times are not often. I choose to stay positive most of the time. Sometimes it’s hard reading so many different blogs and articles because everyone has an opinion about how I should be raising my child. It makes me second guess decisions. They want to tell you what organizations to support, what diet to eat, where to go, what to read, who to follow and not follow. I want parents to know to trust their instincts for their child. Take what everyone else has to say with a grain of salt, and follow your own path. I stand behind my choices made about my son because they are made knowing I just want him to have the best life possible. At the end of the day, he is happy and he is so loved. The rest of it will work itself out.

Tracy is a proud mom to her 4 year old son and a beagle, and a proud wife to her loving husband. She has visions of starting her own blog when she has the opportunity to work less. She also has dreams of making a difference in the Autism community to help other families and children. She also has small but healthy addictions to Starbucks, Twitter and Chocolate. 

You ARE the professional.

This post has been bouncing around in my brain like a bad game of Pong for weeks now. I've composed it several times in my head, and it never goes well. So, I'm just going to be direct about it and hope for the best.

I am disturbed greatly by "professionals"  who belittle and berate parents. "Professionals" with those big important initials behind their names, who tell us that we are "inhibiting your child's progress because of your own stubbornness and refusal to provide necessary therapies and treatments" or even worse, going so far as to accuse a parent of a special needs child of Munchhausen by proxy syndrome (MBPS). It happened to me. I was "creating my own drama". I was incapable of showing my monsters love and affection, to the point that the "professional's" opinion was that I was abusing my beloved monsters through neglect.

I have news for "Professionals" with the big important letters behind their names. I AM the professional. I AM  who provides Logan's care, and the care of his siblings. I AM the professional that knows every single monster's medical history, allergy, phobia, favorite songs, stories, colors, and dinners. I AM the professional that knows every medication and dosage every single one of my children needs. I AM the professional that demanded therapy and care for Logan, and will continue to do so. I AM the professional that can tell you what works to help my children sleep and what does not. I AM the professional who sings my children to sleep, walks the floor with the twinnies until all hours of the night, and snuggles each and every monster~ even the teenagers~ when they are scared or hurt or sad. I AM the professional who teaches paramedics, doctors, therapists, and educators about Logan and his needs.  I AM the professional who has meeting after meeting after meeting to make sure my children are getting what they need.

I am not, however, the only parent who has experienced this particular brand of heartache that will rock your world and make you question every molecule of yourself. Make you wonder what business you have being a parent, if some stranger can come into your home and give you a ridiculously detailed report of every way in which you have failed as a human being, as well as a parent.

I have scrutinized every minute of every day, every second of parental interaction with my monsters ever since this experience began August 6.. while I was hundreds of miles away from home, attending BlogHer and learning from other special needs parents, REAL professionals, and bloggers. Yes addicts, that's right. This "Professional" judged my parenting when I wasn't even there.

I have cried buckets of tears. I have literally screamed in anguish. I have spent hours evaluating every word before I speak. I have taken notes, talked to the Daddy (who, by the way, is the most awesome, incredible, amazing person EVER and has stood by me offering hugs and encouragement during this extremely vivid version of Hell), and wondered how I could possibly be this ignorant. Here's what I've discovered: Professionals can be wrong. Very, VERY wrong.

I may be "just a Mom", and I may not have the initials behind my name, but I guarantee I will give you a run for your money. Nothing, nothing at ALL in this world is more important to me than the monsters. I will move mountains to make sure that they get whatever it is that they need. Right now, oh mighty abuse-by-neglect spouting professional, who is of the opinion that I create drama for attention (And really, when do I have time for THAT??), what my monsters need is for me to forget your existence. To be the Momma, and help them to thrive in spite of the havoc you have left in your wake.

To others who have been abused in this way by "professionals" may I say.. keep on keeping on. The best way to get back at people who think they are God is to prove to them that they are wrong, quietly and with dignity~ something that never would have occurred to a "professional" with a Napoleon complex. Don't get angry. Don't respond. Don't allow them the satisfaction of knowing that they have just hit your jugular. WALK. AWAY. And know that the support far outnumbers the fraud. Although.. this post was neither quiet NOR dignified. Darn. *wink*

Why, yes.. I DID get my degree from a box of Cracker Jack. You, too??

Images in this post by Google images


This post should not be substituted for proper medical care,treatment, diagnosis, or therapy. This post should in no way be construed as a "Professional" opinion because you know... I'm "just a Mom"


This post may be deleted at any time, after I sleep and realize I have just spilled my guts over the Internet.


This post was purely for therapeutic purposes on my part.