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.

 

Advertisements
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.

“Normal” — January 3, 2017

“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.

 

 

 

 

The things I don’t like to talk about, but need to. — November 2, 2016

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

20161101_172231This 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.

 

 

 

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

 

Mom of 2, both on spectrum… — May 7, 2016

Mom of 2, both on spectrum…

I have felt, for a very long time that Max would be diagnosed with Autism just like Leo was. We were told ADHD, OCD, speech disorder, but not enough to warrant services. That his behaviors were what they were because his brother has behaviors.

Until today. Today we had a doctor tell us that he is Autistic and because of the enourmous amounts of early intervention (because he failed a preliminary MCHAT at age 2) he tested at a level one, mild autism. She said had he not had early intervention he would have most likely been more severe.  She also mentioned that hes super smart, and if he works hard on his quirky behavior by age 10 he most likely wont present with any symptoms.

This is the first time I didnt cry at an evaluation. The first time I didnt feel like I wasn’t being listened to. The whole diagnosing team came off so loving. And I am so very thankful. Thankful for support with Max. Thankful for listening ears. Thankful for honest answers. Thankful for fresh eyes.

Hes now on a path to learning even more than he already has, to becoming better and stronger. To learning how to regulate and use his words, to learn to love to learn.

So our family is now Autism strong, both boys in need of totally different help but help just the same. Im ready to watch Max soar, to hear him tell me about his learning, for him to show me what he knows.

This next adventure is going to be amazing, and this momma is ready for it with open arms.