Dyer Family Happenings

A.K.A. Mommy needs a place to write!

And, another diagnosis — May 17, 2017

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… — April 11, 2017

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.

My Christmas Wish — December 20, 2016

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 🙂

 

 

Peace, love and being a momma — September 22, 2016

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

 

 

 

To Leo — August 15, 2016

To Leo

Dear Leo,

Tomorrow is your first day of Kindergarten. What a big dude you’ve become. This past year you have learned so much. We have watched you grow leaps and bounds in the words you say, the foods you try, the friends you’ve made and the confidence you’ve built. On the eve of your first day of Kindergarten I have a few things I want to tell you.

Above all else, continue to love others the way you do now. You have one of the most amazing souls I have ever been privileged to meet. Keep that love always, it’s precious and very rare.

Take a deep breath when you get overwhelmed or frustrated. Make sure to use your words in a nice tone and I have no doubt the help you need is the help you will get.

Make sure it’s “shoot” not “shit” (please, pretty pretty please)

Know that some things are going to be hard and that’s okay because they won’t be hard forever.

Always say please and thank you. To your teachers, the cafeteria lady, the crossing guards and the janitors. They all work very hard to help you succeed and we need to make sure we know how special they are to us.

The days are going to be longer, there will be more structure and more sit down and listen but there are going to be some familiar things too. You’re down the same hall you were last year, the food is pretty much the same and you already have a friend in the class. How lucky that you get to see Jaxn every day.

You are one very very lucky guy. You have so many friends rooting you on this year. So many teachers and tutors that are so excited for you. You have a support system that is literally as big as the sky, full of more love than could fit in the Pacific ocean and more excitement that I have seen in my time so far on Earth.

You are all ready my love. Sweet dreams, sleep tight. And tomorrow we start a whole new journey. I love you. I am so proud of you. You make my world so very good.

Love,

Momma

 

I never wanted to be a stay at home mom. — January 25, 2015

I never wanted to be a stay at home mom.

Yup, you heard me. But I guess before I can expand on that statement I should make a few more- that one of my bestest buddies NEVER LETS ME LIVE DOWN SAYING…
I never wanted to get married or have children. I was always good to go with being Auntie Katie drinking her cocktail and smoking her cigarette and loving and spoiling kiddos.

Then I met Joel, and fell hard, then got to know him and realized this guy made me rethink the whole wanting to get married thing. Like I could actually see myself living with him forever- say what?!?! I missed him if we were apart, he didn’t disgust me when he brushed his teeth, he was (and still is) pretty easy going, and up for adventures. I was like yeah, this guy. I asked him to marry me, and a few days later he said yes LOL. I know I know.

So we were content, started a journey moved to Spokane and one day my body told me it was time to have babies. I was like- yo uterus, check yo self. I DONT WANT KIDS. But, I totally did. So we took a leap of faith and poof Leo. And then a couple of years and a miscarriage later, poof we ended up with Max.

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When we moved back to California Leo was about 3 months old. We had to get settled in a house and get Joel back to work, and when he was 7 months old I went back to work part time. It was a nice mix- I got to hang out with my lil monkey guy and be productive in a grown up world. Then I changed jobs and went to work full time. I’m not going to lie, I was JAZZED about Leo getting to go to daycare. He’d have friends, and make crafts, he’d have holiday parties and learn songs. How exciting, and selfishly I was so excited to be bringing home a paycheck, having a reason to get schnazzed up every day and forming relationships with grown ups that I had very recently been mourning the loss of.

I lost that job about a month before Max came into the world- our company sold and I was tossed into being a full time mommy. We kept Leo in daycare for a while- he was doing so well….. and then his slide started and things changed. Max was about 3 months old when financially we had to pull Leo out of daycare. Shortly thereafter all of the testing started and we started on his journey to new ways of hearing and learning. It was a lot- a newborn and trying to shuffle him around. But I still had the desire to work. I always thought, we can get through the testing and get him into a class or school that will help him grow, I can find a job put Max in daycare and it’ll all be good.

I was dreaming.
I still dream.

I’m not going to lie. I’m 2 years into this stay at home mom job and I still don’t get it. I’m not sure if it’s different when you’re not shuttling your kids to therapies, and preparing the house daily for at home therapy, but I just don’t get it.

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Backyard fun

Don’t get me wrong- I have been BLESSED to see my kids take their first steps, say their first words, eat everything under the sun, put clothes on for the first time, blow bubbles in the bath for the first time. I am watching them grow and change. But I do feel like the world is passing me by. Like I have no way to connect to people who aren’t mommies.

I also can’t even seem to get a call back when applying for jobs. So I guess that’s a sign from God that I’m where I am suppose to be. But I still don’t totally get it.

This is not a job for the faint of heart, for the unsure, for the tenderhearted, for the tired, for the grumpy, for the perfectionist, for the holder of the O.C.D., for the foul mouthed, for the determined… or maybe it is.

It’s thankless, it is 24/7, it is all encompassing, it is repetitive, it drains everything you have in your reserves, and people choose it. CHOOSE IT. I still don’t get it. But it has chosen me. I do not believe “God never gives you more than you can handle” I believe he pushes your boundaries of comfort until you have no choice but to ask for his leadership. That struggle even in its darkest hours, when you want to throw your hands up and walk away a little something creeps in and softens that anger/hatred/mad you have at that moment. That not choosing this path but being placed on it is not happenstance, it’s not by mistake it’s because you have a gift you are not yet aware of. That you are going to meet people also on this path that are going to enrich your life, challenge your thinking, expand your heart and show you love and compassion you aren’t accustomed to being shown. It’s because it’s not about you, or me. It’s about a journey.

And while I’m on it, and I hear that women choose this I want to ask them why. Why with everything there is in this world to try to do, why would you choose this?!?!?!? And I look at my children and I know, because they are so very worth everything I could possibly offer to another human.

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So I say a prayer and thank God that my heart changed when I met my now husband, that his love made me want to build a family with him and that our beautiful children need some extra time and hands and that their needs have put me in a place I will never be comfortable with, but I know I am fully needed.

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I have OCD — December 12, 2014

I have OCD

It’s undiagnosed but its there. And it gets worse when I’m stressed out. BUT it is crazy helpful with certain things, like “monitoring” when Leo has a jump backward. (There is a pattern, I’m starting to recognize it)

After he was officially diagnosed with Autism I started watching. Looking for things that set of his sensory sensitivity, that overloaded him, when we took leaps backward after climbing higher and higher. We have worked very hard through a lot of his sensory issues. Sirens, coffee grinders, lawn mowers and weed whackers he can sit through most of the time. Wild Kratts and BBC dinosaur documentaries amp him up so much that I can’t calm him back down and have been “outlawed” in our house. SpongeBob squarepants (my husband put it on for him one day, that show gives me a headache) calmed him down. say what?

So after starting school, the first big set back we had was after Spring break. The child that thrives on schedule, that can’t function without it, that demands the first thing they do at school now is make a schedule, had to function on no schedule for a week. We went back to school and he went non verbal, started hitting, screaming all of the time and it wasn’t much better at home.

Then came summer break, he had mellowed out a bit and being back on schedule helped “regulate” the tantrums and outbursts, kept his words coming, and whammo. As much as I tried to make a schedule for us- it wasn’t his normal school schedule and we fell back again. School starts, we are okay.

So breaks are the hardest. And I try to explain to him that breaks are good. But he doesn’t understand. Thanksgiving we had 5 days straight off and it’s been a fight ever since. Pair that with music, lights, shiny and Christmas everywhere. So he’s licking his hands, chewing on his fingers, biting, screaming, not listening, hitting, throwing and generally off. And I don’t always handle it well. I try to stay calm, have him look at me and talk it out, but when it’s the 80th time saying we don’t jump on the couch or hit our brother or scream or throw, I end up yelling. And I know that sets it back even more.

It drives me nuts that something that is normal, that we do everyday some days is too much, or something he can’t handle, or that he just totally shuts down and I can’t get through to him. I can’t understand it. No matter how I try to place it in a pattern or watch for what leads up to it.

I know we are going to have ups and downs, sometimes the downs just kick you in the gut.

So prayers to get through this season in one piece would be greatly appreciated.