I am not the mother I want to be.

Most mornings, after I’ve shuttled the kids out the door with somewhat of a “don’t let the door hit ya on the way out” attitude I want to call them back. “Wait!” I think. “Come back.””Let’s have a redo. This was the morning that was supposed to be different. This was the morning I wasn’t supposed to yell.” “This was the morning I was actually supposed to be the mom I want to be. Facebook mom. Happy, loving, nurturing mom.”

Last night, it finally hit me. This angst I constantly feel. The nagging, your kid has special needs and you can’t handle that angst that I constantly feel. The one I’m always trying to fix and wish away. The one I try to drown with tears or ice cream. I finally realized what it’s all about. If I was a church- going person, a God-belieiving person, I would think that “he” put Max in my life to teach me a lesson- how to become that “sticky floor and sticky hands mean happy kids”, laundry and organizing  can wait kind of mom that I wish I was. But alas I am not (that kind of mom or a religious person), so I know it’s totally nature vs. nurture at this point.

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No matter how much I want to be that mom in my head, it’s just not in my nature. It’s  nearly impossible for me to pass by a pile of papers or crumbs on the counter and just leave them. So the fact that Max has to constantly touch everything; rummage through papers, click buttons on my computer and leave sticky milk-filled Cheerios all over the table and floor after every single breakfast drives.me.crazy.

I know he can’t help it. I know he isn’t trying to be…what?…disobedient…annoying…fresh/bad/difficult. But I grew up in a neat and orderly, place for everything type of household and it’s just who I am. Just like the opposite is just who Max is. So how do we figure this all out? How do I accept that he is the child and need to change for him and not vice versa?

By the way, I haven’t even mentioned these struggles also include Ben and my inability to ignore the incessant whining that lets me know day after day he feels overlooked, he needs more attention from me, he is starting to figure out that we all walk on eggshells around his brother.  I know the only  way to make the whining stop is to ignore it, but sometimes, usually based on all of the above, it’s just really hard to do that.

So what I want my boys to know is that I’m trying my very best, I really am. I wake up each day hoping it will be the fresh start we all need. Hoping that will be the day we call just breath and smile and enjoy each other. I want them to know that I’m going to keep trying, as long as they are patient with me, I’m going to keep trying.

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Why We Write

I read a blog post on Momastery today that completely validates the way I feel. Take a minute to read it, I’ll wait.

The author, Chrissy, puts into words exactly how I feel, how I’ve felt for the past 5+ years.  Those words, about Cancer, and how it would almost be easier…I’ve uttered those words more than once. I’ve thought, that has to be easier. There is a clear treatment plan (that insurance covers by the way). With cancer, no one judges how your kids behave in public. No one snickers at the precautions you take to keep germs away from your child like they do about the precautions you take to prevent melt downs or seizures. No one questions whether your diagnosis is real or just the flavor of the month issue that kids have these days. But then, I’ve felt the shame for wishing that because my God, there are people whose children die from cancer. At least my child is still here.

But that dark cloud of sadness, that haze that you live in, that’s real. I’ve been waiting for it to go away for a long time now, but it always seems that just as it slowly starts to dissipate, something else comes creeping right behind it and we’re back to heavy hearts, heavy shoulders and heavy minds.

But like Chrissy, all of Max’s diagnoses have brought a fire to my soul too. They have lit up something in our whole family. We just want to DO something; to fix something not just in Max but all the other kids like him. We want to help. To let people know that epilepsy isn’t just seizures. It’s ADHD and learning difficulties and Autism and not having play dates because how do you ask a parent you don’t know well to administer medication in your child’s rectum if necessary. Autism isn’t just kids that flap their arms, are non-verbal or don’t like to be touched. They are kids that feel, and love. They are kids who grow up to contemplate suicide because they’ve never really had friends and the bullying becomes just too much. They are kids who live in households with bickering parents because the adults are just so on edge all.the.time.

But they are kids that work really hard, and kids who need and want to be loved. So I’m going to take a page out of Chrissy’s book. I’m going to do my very best to follow her words:

“I refuse to waste my entire life on sad because of stupid autism.The best thing I can do for my boys is to give them the gift of a happy me. A really and truly authentically happy me.”

By the way, the title of this post was inspired by this Tweet from Stephanie Dulli.

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Even though it’s scary, we should all be sharing our stories. Me, Chrissy, Stephanie, all of us because there is someone out there who will read them and learn something. Or feel just a little bit better because there is someone else out there that thinks like they do, or feels like they do. And plus, writing it down, getting it out, helps lift some of that heavy weight we all carry around.

Epilepsy Walk 2012

In November of 2007,we heard the words no parent wants to hear. “Your son has a seizure disorder and of all the types to have, this isn’t the one you want.”  This started our family’s journey into the world of special needs, developmental delays, Early Intervention and IEPs. Instead of just learning how to be first time parents, we had to figure out how to juggle full-time jobs, doctor’s appointments, therapy sessions and school schedules. Even 4 years later, it remains a challenge.

This year has brought us many new struggles. Even though Max’s seizures are well controlled, his Epilepsy is affecting him every day in other ways. He has constant struggles with his attention and behavior, trying his best to keep his ever-moving body and mind under control. Since Max will turn 5 this summer, we have spent many,many months researching and agonizing over which type of school setting will be right for him and provide him with not only the academic, developmental and social skills he needs to succeed but also allow him to remain a curious, exuberant learner.

Max continues to be a joyful boy. He loves listening to music (among his favorites are Coldplay, the Foo Fighters and Red Hot Chili Peppers). He is obsessed with bridges and loves to look at photos and identify where they are in the world and if they are “walking bridges” or “car bridges”. He can do any puzzle you put in front of him. As I said about him last year, he has perseverance and bravery the likes of which we have never seen. His personality will take him far in life no matter what Epilepsy throws his way.

This year, 200,000 people in the US will be diagnosed with Epilepsy, which is more than will be diagnosed with Breast Cancer and the mortality rate for both is the same. However Epilepsy research will receive 600 million dollars less in funding than Breast Cancer research, and over 300 million dollars less than Alzheimers research. Your support is helping families like ours. The Epilepsy Genome Project, introduced to us this year, is on track to discover the genetic cause of severe childhood forms of Epilepsy, including Infantile Spasms, the original type of seizures Max had. This is a true sign of research dollars at work and may help eliminate another family having to go through what we did, but more importantly may offer a child the chance at a normal, healthy, long life. In addition, the CT Epilepsy Foundation has used donation dollars to develop the nationwide Child Care Education Program that Max’s teachers have benefitted from. They now know what to do in the event a child has a seizure at the center. They know how to administer Max’s medication and what different seizure types look like; which could save his life. This walk is held to raise money for education and support groups, as well as a summer camp for kids and teens living with epilepsy, all the while trying to eliminate or at least help control this unpredictable and life altering disorder.

We appreciate your support and encourage you to donate what you can. Our team name is Max: The Amazing Race and by clicking on the link, all you have to do is enter your name and donation amount. You can also donate to Ian as an individual. Thank you for joining us in this fight.

The One Where I Feel Like a Really Horrible Person

I am really short with my kids. I yell. A lot. Particularly at Max. The little annoying behaviors just build and build until I blow up. I know it’s not healthy for any of us, but I don’t have any alternative strategies.

Max doesn’t have an Autism diagnosis, nor does he have a diagnosis of ADHD or any other similar type of disorder but he exhibits many of the same behaviors. And to be completely honest, they drive me crazy. I find them to be really annoying.

I know that’s not the politically correct thing to say or the way a parent is supposed to feel about her child. I know it’s not his fault, I really do. The arm flapping and spitting are not terribly difficult to deal with. I can overlook those most times though it breaks my heart to see his younger brother or cousin mimic him…not in a teasing way, just in the “monkey see, monkey do” way that toddlers have.

It’s the lack of a “calm body”. I’ve ready books about active boys and I know hyperactivity is common in young boys. I’m seeking out help from his doctor for behavior modification suggestions. But for now, we can’t get through a book without him elbowing or kicking me in the gut or shin or face. We don’t get through a meal without spilled water or milk. When he eats yogurt, it’s all over his shirt, pants, the table. His body is riddled with bruises because he’s constantly bumping into things. He can’t resist kicking or hitting his brother for no reason or without warning. Though he does have some fine motor skill delays that might be contributing to the eating issues, I really don’t think that’s it. His brain and body just never idle. They never turn off. It’s exhausting and embarrassing and I just don’t want to have to deal with it all the time.

So this is my cry for help. Parent of kids with these kind of behaviors, how to you handle it? How do you accept it? What do you do about it?

The Soccer Game

Today was the big preschool soccer game. I had high hopes. Max has been talking about soccer all summer even practicing the drills sometimes. I should have known better but I really thought this would be the time Max would participate. I had visions of him running freely up and down the field with a big smile on his face. I was excited; Ian left work early to be there. This is what we dreamed of before having kids and even more so after having boys. Afternoons at the soccer field! This was going to be great.

Well, I didn’t have it exactly correct. The only time he was even out on the field he was on the opposite side of the action and it was because one of his little buddies held his hand and dragged him out there.

Like most organized activities, I left feeling sad. I wonder when I will accept Max’s delays; when I will stop mourning the loss of his “normal” life. There were plenty of other kids that were not participating, they were crying even, but I didn’t take comfort in that. I just wanted to shout out to everyone, “Wait, you don’t understand. He has special needs. He has delays. You should feel bad for him!” I know that someday I will come to terms. I’ll stop comparing him to every other kid and relish in his accomplishments rather than focus on his delays. I’m just not there yet and days like today take my breath away.