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.

 

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*&JH&^%^$&&# *&^#@&*%()&)(&$ and then some — February 4, 2015

*&JH&^%^$&&# *&^#@&*%()&)(&$ and then some

This:
http://www.mayoclinic.org/tests-procedures/eeg/basics/definition/prc-20014093

This is our next adventure with Leo. A Provider brought up the possibility of seizures, so here we go.

Scheduler: “Okay, so the night before the test you’ll need to keep him up for at least two hours past his normal bedtime”

Me: “Okay” (SHIT how am I going to stay up that late!)

S: “And you’ll need to wake him up at least two hours earlier than normal the next morning- we need him tired.”

Me: “Um, he wakes up at 5:00am ish…” (Oh Hell you’ve got to be kidding me)

S: (Laughs) “well, okay just make sure you don’t let him fall asleep on the way to the hospital for testing”
(Keep in mind the hospital is a 20 minute FREEWAY DRIVE away, I fall asleep driving out there, have I mentioned I can’t wait for Fresno Community hospital to have a Pediatric everything, 5 minutes from home)

Me: “Okay well he should be good and grumpy tired, I’ll just sing really loud in the car the whole way out there.”

S: “You also want to hold liquids and food from about 9am until you get here- at 12:30”
(Lady you are trying to motherfracking kill me aren’t you)

Me: “Okay. How long is the test”

S: 2- 2 1/2 hours.

Me: “Okay looks like I’ll need to find care for my 2 year old, cause trying to corral him for that long will be AWESOME” (there was just a smidge of sarcasm in that phrase)

S: “Well you know, we are a hospital for children, we are used to it”

(Really? Cause if you were a hospital for children you would figure out how in Gods very green Earth to conduct these tests either:
a) in a different method
or
b) in the evening when hes exhausted from the day

Cause right now lady I think you are full on CRAY-ZAY)

I might need a few days to recover from next Wednesday.

Sleep, spiderman, veggies and referrals. AKA life — December 4, 2014

Sleep, spiderman, veggies and referrals. AKA life

Life has been busy. I thought having 5 days off of all therapy and being able to “fly by the seat of our pants” would be awesome. Then my thoughts came crashing down realizing I have an austic child that needs a schedule to function. So our Thanksgiving weekend was a little rough but we made it.

Spiderman (also known as my mom) has been called a few times to convince Leo veggies are good to eat and that they make Spiderman big and strong. This morning was a flip situation that had me holding in a laugh so very hard. Scrambled eggs have been another “please just eat it” food. This morning he scooped up a giant fork full, put it in his mouth, chewed it up looked at me and said (very proudly I might add)

“Momma, call Spiderman” so we did. It was awesome.

Our next goal is to get him to try new foods without gagging himself as they go into his mouth.

Last night everyone slept in their appropriate beds. This hasn’t happened in months. No one woke up in the middle of the night, no cries, nothing. It was fantastic. I don’t want to get excited but here’s hoping and praying for another sleep night like that.

As excited as the boys were for Halloween, the Christmas excitement isoff the charts here. Including Leo explaining to everyone that Santa comes on Christmas, which is Jesus’ birthday and that Spiderman will be making an apperance at his birthday party as well.

In between all of this I am trying to continue my quest of strength training and losing more weight while giving myself shin splints. My beloved and totally evil (God I love her) Physical Therapist basically threatened to remove my legs if I don’t let them heal. gah. So the bike it is.

Now we are waiting for more fun seasonal things, cookie making, kuga making, Christmas Tree Lane and referrals to specialists for both boys. Tummy issues, possible seizures for Leo and making sure Max can hear because he too will be starting speech therapy soon.

So heres to life. And embarking on a season to love a little more and a little harder, and to celebrate Jesus, family and love.

Delayed speech, big lil dude and the sweetest 3 1/2 year old on the planet. — October 18, 2014

Delayed speech, big lil dude and the sweetest 3 1/2 year old on the planet.

Max had his well visit, he’s a big boy. Our Peditrician said he’s on the path to being bigger than Leo and Leo is a DUDE. (My thoughts on purchasing a grocery store and a pants store to get us through the teenage years may need to come into reality..) Max measured in at 31lbs and 33″ tall. He is solid, and smiley and only has 2 words. It seemed like he had closer to 5 maybe a month ago, but “wassat” and “momma” are it for right now. So I racked my brain trying to remember where we were with Leo at a year and a half. (I know you can’t compare your kids, but he’s all I’ve got to go on)

Leo never had a problem with words. He had lots, never in sentences but lots of words- labeling words. And then one day or a month went by and there weren’t any new ones. And his Leo jibber jabber was in the forefront of his speech. Max hasn’t ever really had words. Our Peditrician referred him to speech therapy. And I’m worried. He is what he is, and he will be amazing and full of love regardless, but damnit. I don’t want him to struggle with words like Leo still does at times. I don’t want him to go through the frustration of not being able to tell us what he needs.

I started with the PEC book with him today. It’s going to become part of his and my one on one time while Leo is at “school” 3 days a  week. But, I’m worried. A lot.

Leo rocked his first day at the clinic. He has different tutors when he is there. He played with another little gal there, and I guess the ball pit was his favorite. I am really excited for some sensory integration into his therapy. Bouncing, ball pit, finger paint whatever. He licked a baby carrot and some ranch dressing this week- and last night ate a quesadilla with some apple in it.  Made me a super happy momma.

When we were leaving the clinic he stopped, looked up at me and said “momma, I have friends”. It’s a good thing I had my sunglasses on because I cried like a baby. I have been so worried he wouldn’t be able to make friends. It was always so hard for me as a kid to make friends and I don’t want that for him. I want him to run and smile and laugh and play. I want there to be kids at his birthday parties, and I want him to get invitations to different things with his peers. Being accepted. I want him to be accepted.

It’s been a week. I’m happy for a zoo trip tomorrow and some family time Sunday.

One year ago today… — October 9, 2014

One year ago today…

After appointments, assesments, ear tubes, hearing exams and my mommy gut being in over drive, we were told that although unable to officially diagnose Leo, he had “Autstic-like” characteristics and was officially qualified for therapies through the CVRC program.

B-I-T-T-E-R-S-W-E-E-T

It was both the best and worst day I had encountered  since giving birth to Leo 2 1/2 years prior. I was so relieved that my mommy gut knew something wasn’t right. I was so sad that it was autism. Why did it have to be something there is no cure for. If it had to be something, why in the world did it have to be something that is a spectrum, that changes all of the time? How were we going to do this? We have this beautiful toddler with eyes that sparkle, who loves dinosaurs, who wants to play with others, who can’t communicate with me. How?

So I prayed. I asked God to lead us. I asked him to show me what to do for my family. I asked him to grow my heart and patience in HUGE amounts, to open my mind and my heart to everything I needed to learn to help make him better. And to not forget that our Max needed to be loved on at the same time.

And he answered my prayers. I was introduced to an amazing group of women through church that had either been through the process that we were just starting or were starting to go through the same thing. We had the sweetest speech teacher that gave me so much hope. God has placed amazing women in our life that have helped Leo, taught Joel and myself and loved on Max.

And I realized when he was officially diagnosed a few months later that I definately believed. There is no way I could have gotten through this without putting it into Gods hands. I needed to give my worry and my sadness to a higher power, to someone that could guide me, to someone who knows our path as a family. It was a sense of calm for me.  It helped me relax and be open to what professionals needed to tell me.

So one year ago today my life changed in so many ways. Wasn’t sure how to deal with any of them at the moment but in hindsight October 9, 2013 was an amazing day in my life.