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
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.

 

Dear Leo, — November 13, 2015

Dear Leo,

This week was a rough one. I totally understand. You weren’t feeling great, it’s cold, there was a holiday right smack in the middle of the week, one of your teachers was out sick most of the week. I get it buddy. But here’s the thing. Changes are going to happen. I know you have a hard time with them. I know that sometimes you get all scrambled up and can’t tell me that you’re not okay, but in those moments I need you to take a deep breath and try to find your words. Your nice words.

Walking you out of class today broke my heart. I know you wanted treasure box, but you know how important it is to earn it. And we earn it by having nice words and hands, by making good choices and by listening to all of the wonderful teachers we are so blessed to have guiding us at school. Mommy doesn’t like to have to worry about your actions. I know you know how to be a superawesomefantastic dude, because you are so much of the time. And I know that you know how to ask for a break if you’re feeling overwhelmed. So lets slow down for a minute and listen to our body.

Promise me you’ll try to choose nice words and hands next week. That if someone puts their hands on you on the playground that you’ll say “No I don’t like that” and tell a teacher instead of pushing back. That you’ll try your food and not put garbage in a friends food when they aren’t looking. That you’ll be kind. And that you know that no matter what your actions I love you so very much.

I’m proud of all of the progress you’re making, and the things you’re learning. And know that we all have bad days and rough days and days that we just don’t want to do what we need to do, but we still do them. Know that on those hard days I’ll be waiting to pick you up with a giant hug and some snuggle time when we get home. Talk to me. Talk to your teachers, we all want to see how wonderful you are.

I know you’re really upset about not getting treasure box this week but we will try again next week. Max and I will be there as much as we can to help you when you’re feeling overwhelmed. Take a big deep breath my love. We all get through the rough days.

Love,

Mom

Seasons of change, not just summer to fall — October 26, 2015

Seasons of change, not just summer to fall

California is finally getting the memo that it is in fact autumn. It’s still a smidge confused but the brisk mornings are a nice way to start days. But weather and month changes aren’t the only things that are changing around here. Surprise surprise. (One day all I’ll write is- everyone is alive and nothing has changed and that might come in about 35 years….)

Leo is still majorly rocking preschool. His questions, conversations and general talking is loud and never ending but I love it. Even when it’s 5am and I don’t feel well. He tells us when he’s excited and happy and angry and sad, but never when he’s tired. 🙂 admitting that at 4 would for sure be the end of the world. Wednesday we have his first Parent Teacher conference. I can’t wait to hear all about how he’s doing. With all of the advances he’s making, regulating (stimming) has become more pronounced. You can tell it’s totally involuntary movements and it’s amazing how it helps him get his words out when he’s excited or calm him when he’s upset. I’m proud of him. He’s understanding his own body and that is HUGE.

Max is talking up a storm. His fits are more appropriate to being 2 or tired or a boy that just wants to throw pumpkins. His therapy is changing totally. We are actually backing out of ABA and he will be having more focused therapy to work more on speech and O.T. for some super testy sensory issues. I get one on one time with him to talk and read and sing and play with playdough. I love it. I’m proud of how he wants to be a big boy. He wants to go to school with Leo. Wednesdays are library day and he just loves it. It’s slowly coming together for our boys.

Last Wednesday was a hard day. Max spiked a fever and had a seizure. It was definitely the scariest thing I’ve ever seen. He was purple from not breathing, he was unconscious for way too long and when he finally came too, he wasn’t Max. It was like the sparkle in his eyes was gone. It freaked me out. I just wanted, no I needed him to say “momma”. If he said that somehow I thought it would all be okay. He slept most of Wednesday after we got home from the hospital. And Thursday morning it was like watching a miracle unfold.

He woke up, happy camper style, walked into the living room and started talking. 2-3 word sentences. Words he’d never said before. Rewind to Wednesday night when my husband asked me very honestly “when enough is enough for our boys”. They have had so many hurdles already and we just need them to be able to be. I feel like God hear him. This was his way of saying, lemme show you that things are going to be okay.

We had already made the decision to pull him from ABA, but his communication becoming so much better since Thursday made it easier for me to confidently remove him from ABA services this morning. Because I felt God saying, you’ve got this because I’ve got you. And I am so thankful. I am thankful for what ABA did to help our boys, I am thankful for my husbands teamwork with raising our children, I am thankful for the tutors that are more like family and I am thankful that when it feels like we can’t handle another thing that God tells me, I got this. Because you put your faith in me.

I know there are lots of people that don’t believe or are skeptics about faith, but I’ve gotta tell you in my shoes it’s a real deal.

Now I’m looking forward to the next season and what it will bring to my family.

Week #2, here we go — August 24, 2015

Week #2, here we go

Leo had a great first week at school, Max had a great first week without his big Bro by his side, Mommy had a rough week but pulled through.

Things I noticed from this past week:

Leo’s focus and listening has already improved.

He has been trying new foods.

He loves his teachers.

His behaviors come out when he’s exhausted.

Leo is 4 1/2 years old and has school and therapy 6 hours a day. 6 HOURS A DAY.  Today I make the phone call to the regional center to discuss our funding issues if I cut him back on therapy or how hard it would be to get it back if I dropped it all together. He needs down time, he needs to be a kid and he hasn’t ever really had a chance to do that. And I’m going to say it- it’s not fair. Yeah, it’s not.

We can’t decide to go see a movie or go to lunch or sit in our underwear in a sheet fort after school because he is always being pushed to learn. And he’s done better with it than I would. So today I get a few more answers, today I start the process of either backing out of or totally dropping ABA. I love ABA, it’s making my children better, but the school he’s in is incorporating ABA into his mornings and I’m good with it.

More to come.

Happy Week everyone.

Exhaustion — May 24, 2015

Exhaustion

It’s hard trying to keep things together when you’re exhausted.
Today marks the 7th day in a row where I’ve been on my own with the boys for the better part of the day. (Single moms, Moms with deployed husbands and weird work schedules- I don’t know how you do it all of the time)
Our schedule has changed a ton in the past few weeks, and we rarely leave the house anymore. Max has ABA every weekday morning from 9 to noon and then 3 days a week Leo has ABA in the afternoons from 1 until 4. I walk everyday, but most of the time they are short, mile ish walks that only leave me out of the house for 20-30 minutes.
Yesterday was my standing Saturday House Cleaning gig, 4 hours of James Taylor Pandora, scrubbing and no children screaming that the other one was trying to touch them. It is glorious. (A big thank you to NANA yesterday for taking the boys to the zoo so I could get my job done and earn some money)
House cleaning has become a great supplement in our income and a great source of therapy for me. Physical tired is always easier for me than mental tired. And consistently having to
ask for the boys to put cups away
ask them to use words,
keep hands to themselves
stop screaming
listen to the tutors
stop getting in my face
eat what is on your plate
no you’re not getting dessert first
please don’t pee on the toilet pee in the toilet
no you cannot watch dinosaurs
no we are not playing trex in the house
its raining and cold you cannot go swimming
why are you putting a new pair of underwear on
yes you did poop and yes I am going to change your diaper
that is juice isn’t that what you asked for
please do not ride the dog
the cats tail is not a lasso
you can be a cowboy as long as you don’t hit anyone with the rubber snake
rolling chairs are not appropriate step ladder
you asked for Elmo this is elmo
we don’t rip pages out of books
please don’t pee on one another
no you cannot have a 3rd otter pop
there are 3 bicycles stop fighting over the same one
no we are not having chickensandfrenchfriesandsauce 3 times a day
I’m planning on a very long walk today. Here’s hoping my body stays together enough until I actually get to make it happen.