Thank you

Thank you for making me a wife and mother.

Thank you for providing for us both financially and emotionally.

Thank you for teaching me patience and softness and love like I hadn’t had before.

Thank you for always being up for an adventure.

Thank you for loving me when I am lovable and when I am not.

Thank you for holding my hand when I need you to.

Thank you for being you and letting me be me. We are better together than we are on our own.

9 years ago we promised forever. For me, our love now is deeper and more meaningful than it ever has been. I love raising a family with you. Thank you for choosing me.

Happy Anniversary.

Now go grow me some tomatoes 😉

And, another diagnosis

Today is Maxs IEP for placement for fall. Yesterday I wrote on facebook how seeing the words “severe autism symptoms” was like a gut punch, because it was. I know that his symptoms can be all consuming- when he says the same word or phrase over and over for 5 minutes and there is no getting him to stop. Or when he continually slams his entire body into things. Or when we are in public and he his rubbing his face on my hand while we are walking.

All of these things are just part of our daily with him, and have been for the longest time, so I forget that they aren’t neurotypical behaviors. And there isn’t anything neurotypical about our household so why I would think there would be any resemblance to those types of behaviors I’ll never know.

And this diagnosis doesn’t change who he is, how damn cute he can be, the amount of dirt he likes to move or how many pop tarts he eats. But it adds another thing to the list of things that keep him from being “just another kid” and that was my hope for him.

My hope for both boys was to grow and learn and be active and healthy, and they are. I never in a million, trillion years thought I would be using acronyms like IEP, BCBA, KDVS, SPED. And here we are. Surrounded by them, each one medically defining our kids and trying to remember that they are more than these letters. They will be more than these letters. They are capable of more than these letters.

Sunday our Pastor at church was talking about how being a mother is consistently preparing to say goodbye, sending your kids to school, to sleepovers, into the world to build their lives. And I found myself in tears because where we are at with the boys the thought of saying goodbye puts a lump in my throat.

Joel and I have talked about our plans for the future, and our plans include our children having to live with us forever. Not that they will, or that we would in any way try to hold them back from soaring, but our reality is that we don’t know how their autism is going to progress, regress, stay stagnant. We don’t know if they are going to be able to understand certain daily living things. We don’t know how long seizures are going to be a part of Maxs life, or how the KDVS is going to change his organs for the better or the worse. So we are planning, on being the House O’ Blue eyes with 4 human inhabitants for life.

And this isn’t something we dream of as future parents. We talk about our kids getting to go to school, and play baseball, make honor roll, go to college, travel the world. And right now we plan one quarter at a time. Because of the changes in schooling or medications that may have to be made. Because we don’t know if a classroom setting is going to be too much or not enough. Because we don’t know when the next seizure is going to hit. Because we haven’t had scans on Maxs heart and kidneys yet. Because we live in a very pliable world, that may need to be shaped differently at any given minute.

So yes, these words sting. Yes we are so excited that Max gets his chance to be in a school setting in the fall. Yes, we have two wonderfully loving boys. Yes, our world is always changing and always challenging but it is always overflowing with love.

 

Never did I ever…

Never did I ever think I would be a wife and mother.

Never did I ever think I would love as hard as I have every single day for the last 6 years and 63 days.

Never did I ever think I would be a special needs parent.

Never did I ever understand what an IEP was, until 3 years ago.

Never did I ever want strangers involved in my world.

Never did I ever think that schedules and therapy and specialists would be a huge part of our lives.

Never did I ever think 90% of what I cook for my children would be tan.

Never did I ever think that I would have to hear the word “Autism” attached to my children

Never did I ever think I would have to fight for the help I need.

Never did I ever think this would be life.

Never did I ever know love, patience, laughter, togetherness, faith, persistence, emotions and want as I do now.

Never did I ever see myself as an advocate for those who struggle with words, and noises and light and smells and being homeless and having nothing

Never did I ever think but I get to live such a beautifully imperfectly perfect life and for that I am so very thankful.

Huh?

I had an impromptu lunch with a friend yesterday. I hadn’t seen this person in a while. I know that I post a lot of my life on social media- it’s my outlet- but I also realize this person does not read anything of mine, or rather doesn’t acknowledge that they do.

We had about a 45 minute long lunch and they did not ask me one question. Nothing. Not about the kids, having to put our dog down, work, new church, nothing. And for the majority of the lunch I sat in silence while they talked about their family, themselves and stories about where they are currently, that I have been told a dozen times before.

It was kind of eye opening. I make it a point, usually (in this case I didn’t need to) ask about others. I want to know about your family, your work, your exercise routine, your crappy Valentines Day, all of it. I love hearing from people. And maybe it’s my fault for establishing this type of conversational dynamic from this person. That I always listen, so there is no reason for me to contribute.

That aside, I ask- How do you communicate? Do you ask questions? Are you involved in those around you? In those you haven’t seen in a while?

This is a big part of my connection with our clothing mission at church and handing out ponchos and socks to the homeless. The verbal connection. Giving people a chance to talk to me about their life, if they wish. To make all people feel important, and special and recognized.

If you are not having ebb and flow conversations, I encourage you too. It is amazing what you find out from others when you ask, listen and engage.

 

The realization of change

Leo’s 6th birthday party was last Saturday. It was wonderful for multiple reasons. Surrounded by friends and their children and realizing how full our life is.

A few days prior I was struggling with relationships I keep hanging on to. They aren’t fluid, they arent soul filling but for whatever reason I continue to hold tight to them. Because they had been part of my world for a long time.

Saturday and then Sunday at church shifted my mindset. I am currently surrounded by people that are active in our world, that care so hard, love, worry, love all of us. All 4 of us. Because it’s not just about me and who I surround myself with.

And although some things are hard to let go, they are necessary. And letting go opens our eyes to the wonderful people and things that are active in our lives.

 

 

“Normal”

I keep wishing for people who do not spend every day with my children to tell me that what they do is “normal”.

Let me be very very plain about this, I would love to have “normal” kids, with “normal” meltdowns and “normal” things, but I don’t. I am okay with it, and I’m asking everyone else to be okay with it too. We have things that are totally age appropriate and developmentally appropriate, but what people that live outside of these 4 walls don’t see is all of the work we put in as a family to appear “normal”.

Daily we have to talk about our schedule for at least 30 minutes before we can leave the house, sometimes longer, and I am to the point of reinstating a visual schedule for both boys, maybe that will happen today actually. If I refuse to talk about it for the 7ooth time we melt down, hard.

We get stuck talking about the same thing for days, and sometimes even weeks. When the subject is changed, we melt down. If things are asked in different ways, or told in different ways, we melt down. If one of the kids tells the other what they are saying is wrong, without using a specific phrase, we melt down. It’s a circle that sucks to get stuck on.

We have a very specific way of starting the day, if that is interrupted we melt down. If we are going to be doing something special or out of the ordinary there are days of prep involved in making it a success. If it is to a place we’ve been we talk about when we are going, we look on calendars, we count days, we tell every person we come in contact with. If it is a new place we have a million questions and if left unanswered we have issues.

We stutter, and spin, and flap and hum. We fight sleep and have night terrors. We have seizures and tummy issues and are hungry all of the time. We try new foods and gag hard every time. We do better when we have our kindles and headphones on. We can’t move to a certain task until we have finished reading an entire series of books. We HAVE to brush our teeth after every meal, we have to eat every meal and snack at just about the same time every day.

We lose our words when we are over stimulated, we sleep hard after seizures, we have to be in charge of everything. We try to play with friends and end up alone just about every time because we can’t figure out how to play tag, or why they aren’t into the overly complicated adventure game we’ve concocted.

More than anything we try every day. We try to just go with the flow and it’s hard for us. We try to find our words, we try. And sometimes we have ugly responses, and they aren’t always intentional, and mommy and daddy know when they are and when they aren’t. But we still get the looks and the eye rolls and the stares.

I see where other almost 6 year olds and almost 3 year olds are, and I know where my boys are. I know where we excel and where we lack. But normal, we are not. AND I AM OKAY WITH IT.

So please, stop telling me things that worry me are just normal and they will out grow it.

 

 

 

 

My Christmas Wish

It’s not for anything grand or sparkly or expensive. It’s not for unreasonable expectations of others or the failure of persons or things. It’s not for wealth or things, packages or dinners.

My Christmas wish is for love, compassion and outreach to those around us. Open the door for a stranger, say good morning, text someone you haven’t talked to or seen, show up on their front porch with a hug, post something silly on their Facebook page.

Social media makes it so easy to stay connected to one another, yet I rarely see people anymore. If we can at least let one another know we are thinking of them it might just make someone’s day a little brighter.

I ordered a few things on etsy, they aren’t for Christmas but I ordered during a time where everyone thinks things need to be done right now, that they are more important than the person before them and certainly after them. These shops had to post messages about how busy they are during the holiday season, that they are working around the clock to get things to folks and that if people are rude in emails they will cancel their orders. It made me really sad that people would lash out via email that something isn’t happening in the appropriate time.

I sent both vendors a note wishing them a Merry Christmas. That was it. Nothing more. I got a response back that the email made their day. Something so small, a gesture we give to family and friends given to a stranger, and someone I will never meet in person made their day.

So lets extend this to everyone we meet, but not just during the hectic holiday season, lets do this year round. Let people know there is light and love very present in a world that sometimes seems very dark and hard to maneuver. That even when we are heartbroken because of family goings on and politics and broken cars and never enough money that there will always be someone there with a kind word, a smile and perhaps a hug (if you’re a hugger) to shine a little light on those hard times.

Merry Christmas, Happy Holidays, sending love and light to your world. And I hope you pass it on like wildfire 🙂

 

 

The things I don’t like to talk about, but need to.

This is now 3 days old. This is what happens to me often because of the boys. Its from being pinched or head butted or hit and at one time bit. Its because there are times they cant regulate, because they are overloaded and scared of something or some place.

Saturday going to trunk or treat did this to Leo. He was super excited, and when we got there he fell apart. Too many people, he didnt know where he was, he didnt know anyone and I hadnt been able to verbally walk him through what to expect because Id never been either. At least once a day Max takes my hand, he squeezes it so hard it hurts me and hi rubs it on his face, over and over and over and over. He does it until he is able to regilate his body and find his words when hes over stimulated.

I dont make a big deal about it because its part of our world. I dont talk about it because its very personal to the boys and there are times they draw attention to themselves with their physical actions. I dont talk about it because I dont want to have to explain, again what is going on with my kids.

I can feel when my kids are going to lose it. I can see a shoulder twitch or a breath, a hand motion or hear a pitch change in their voices and know if we are on the verge of a meltdown. If they are over stimulated. And sometimes it means that we are jamming from where we are at. Because my heart cant handle the eye rolls, stares and comments anymore. Because the people that judge us dont know how hard the boys have worked to learn how to stim and they dont know how hard Ive worked to accept autism.

Sometimes we wear bruises. And they keep up grounded and knowing that we are still working.

 

 

 

Faith unwaivering

Okay. I’ve had to step away from the news so many times in the past 6 months because of being angered, irritated and totally outraged at not only the actual news but the way it is being presented. Its ugly, its fear driven and its completely unacceptable.

Election years are hard. People shoot for the neck at one another they try to find the soft spot to poke and poke at. We repremand toddlers for this kind of behavior but every 4 years it becomes acceptable “banter” between candidates. Why our standards of mutual respect have taken a dump I’ll never understand.

Election years are hard for me on a spiritual level as well. My spirituality and belief in God is very personal. It doesn’t mean I won’t talk about it but I choose not to verbally lead with it. I do however try to lead by living it. I also believe that my personal beliefs do not traffic direct how I feel the government should be run. I do not live in a “Christian Nation” nor do I believe my beliefs are the only beliefs that should be accepted. I do believe that law is black and white, that there is way too much private interest money in very public issues and that religion of any kind has NO place dominating the government.

It is disgusting to me how one candidate claimed to be “Saved” and since making this public declaration has declined in his behavior. I’m not talking about his past (but his general disrespect of people is pretty awful) I am talking about lies that come out of his mouth, his threats, boasting, and general arrogance. I am disgusted with his followers that feel that violence, physical intimidation and awful words are appropriate ways of communication.

I have been worried about our country if Trump is elected and now, very honestly his followers scare me more. The violence is already amping up. If Trump is a Christian, as he openly professed he would be attempting to calm things down, even more than that, he would have never amped them up to begin with.

While my heart it hurting, my nerves are on edge and the Holiday season approaching my faith will not waiver. I have faith as a people we will shut down the violence. I have faith that as a people we will show love and acceptancefor one another. I have faith that as a people we will learn from one another, we will lift one another up and we will pull through this time of anger and ugly with a more positive community.

 

Peace, love and being a momma

Today is International Peace Day. A day to spread peace and love speak and actions with everyone you meet. To show this world that we can and will not only conquer the rough stuff of life with love and smiles but that TOGETHER as a people we are better. Think about it, all of the beautifully amazing different things we all bring to the table. Thoughts, ways to worship, food, clothing, music, it’s amazing and beautiful.

And I don’t know why people are so scared of the things they don’t understand.

Embracing the things I don’t understand is just part of our world. Or rather has been for the past 5.5 years. There were things I didn’t understand before but I’d either learn about them or scootch around them, I was in control  of what I slammed face first into. And then Joel came into my world. He was new and I didn’t totally understand him and then we got married and I still didn’t have him totally figured out but I was much more comfortable with him. And then came Leo and the same, and then Max and holy Lord.

And just when I thought I was starting to understand Leo, bam- he regressed and was diagnosed with Autism. Same thing with Max. God has not let me live in comfort with these kids yet, and guess what…

I AM OKAY.

woah, wait a minute what. Yeah. Even in the moments, days, weeks, of uncertainty and confusion I am okay. Go figure that one. Even when I am not sure how to handle a behavior, how to make words come, how to keep health insurance, how to make a living, how to get from one place to the next in the correct time, I am okay. Why? Because I have faith. (Yes I have faith in God but He’s not who I am specifically talking about right now)

I have faith in the people around me. Family, friends, teachers, strangers. I have faith that there will be listening and love and understanding. That there will be hugs and tears and smiles and celebrations. Because that faith is what keeps the love moving from one person to the next. It’s what keeps me waking up every morning and wanting to push forward and through to that next hurdle. Because I know that there will always be someone with a kind or helpful word that will help get us over it. Because loving is learning.

So lets keep moving the love forward, even in the simplest of ways to one another. Have faith in your fellow man even when you might not understand his or her lifestyle choice, religion, choice of shoes. Because those things aren’t as important as being better together, and being together as people trying to live and love.

Wishing you all a peace filled evening and life