Dyer Family Happenings

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

“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.

 

Our Autism world — April 3, 2016

Our Autism world

Every household, every set of kids and parents’ world with Autism looks totally different from the next. Some have school and some therapy. Some baseball teams some video games. Some are filled with words some are quiet. Our world is so full, and I’d love to share some of what it’s filled with. 🙂

Our world with Autism is filled with preschool and church and dancing and music. It’s filled with McDonalds and pizza and pancakes and bananas. It’s filled with bubble baths and movies and stuffed animals and snuggles. And jammies and favorite books and laughs and hugs. It’s filled with words, some that make sense and some that don’t and some that take a very long time to master. It’s filled with transitions from thing to thing and place to place that are sometimes really hard and with repetitive questions about our schedule for a greater part of the day.

It is filled with noise and light and smells and sounds and sometimes these things are really hard to push past. It’s full of toe walking and jumping and flapping and spinning circles when we are excited. It’s full of swimming and dirt digging and car playing and kung fu. It’s full of emotions that come very heavy in waves and sometimes not at all. It’s full of drawing and coloring and learning to read and write and frustrations because these things are super hard.

It’s full of excitement for things like birthdays and fireworks and morning prayers and car sing alongs. It’s full of adventures to the zoo and the discovery center to the park and around the corner to Walmart for doughnuts. It’s full of abcmouse.com and Anamalia books and spiderman and legos. It’s full of smiles and frowns and yells of joy and tears of pain and frustration.

But more than anything else listed, our world is FULL OF LOVE. Between one another, we show it to our neighbors, the homeless, our extended family and our teachers and each other. Our friends and animals and the grocery store clerks and waitresses we encounter every week. The love is what makes the good great and the rough patches easier to pull through.

Living in a household driven by speech delays and sensory issues and stimming and constantly having to repeat conversations is draining, both mentally and physically. I’d take away every stutter, flap, nipple pinch, loud noise and bright light that Leo can’t handle in a heartbeat. I’d take away every struggle Max has with his words, his head hitting, his spinning and his toe walking so fast. But it is who they are. And it’s okay. And it’s okay because we love.  Our family is just like everyone elses, with kiddos learning their footing in this big old world and teaching their mom and dad how to open their hearts and minds even bigger to accept them as they are.

I’d love to hear what your world with Autism is like. 🙂

lets light it up blue!

 

I’m not a fighter — February 23, 2016

I’m not a fighter

I’m not. I absolutely despise it. I will if I’m pushed to, but I try like hell to avoid it. I’m too emotional, I get mad, I cry then I’m pissed that I’m crying and I get mad at myself. It’s just ugly. It takes me an exceptional amount of time to be able to separate my emotional self from my “business mind” self. And unfortunately I have to talk or write out my emotions. I apologize if you end up one of the people I ramble to.

I’m trying to navigate a world I’m still very new to. Special Education. With Leo things were pretty clear, our path to where we are now was up hills, down valleys, around corners and through some pretty big traffic jams, but we are right where we need to be, entering mainstream school in the fall. Max is a big ball of I don’t even know.

Socially he’s reserved at first but when he warms up its on. Outside of that he has so many things that put him on the autism spectrum. Sensory issues, lack of speech, major out busts, spins himself in circles, doesn’t sleep, balance and spatial awareness issues. But he was not diagnosed as on spectrum. I don’t understand. Are social quirks and lack of eye contact that heavily weighed in an evaluation? Are all of the other issues, including slow processing and the inability to form a sentence of even 2 intelligible words not factors? I am so lost.

Do I want to have another child with a diagnosis? If it will help both he and myself then yes. If it will help explain why he screams and won’t wear clothes, why he shakes and looks like hes being stabbed with needles when you put a tshirt- with no tag on it on his body. Why he is having night terrors that last 20-60 minutes and there is nothing to be done. Why he walks around with his hands in fists and asking him to open them throws off all of his balance. Why he can dribble a soccer ball across my back yard but can’t get into the car without running face first into the door every day.

Why even with once a week speech therapy, practicing at home and at Leos school he still can’t say “Mickey”. How I am one of the few people that understands 99% of what he says, but most people need me to translate.  I’m lost. So I am asking for reports and for different evaluations. I’m asking for help because I am terrified that on March 17th, his 3rd birthday and our official first day with no services, that I am not equipped to help him grow.

I’m not borrowing worry or making things bigger than they are. He’s not just a brat, hes frustrated and I am too. But I can tell people that I am. Max can’t. So I’m having to prepare to fight, to fight and ask for full evaluations that we did not receive. To fight to ask for what I know in my heart is right for Max. And my anxiety is off the charts high and I can’t bring it down.

So ready or not here I come. After I get this emotional garbage out of my mind.

More worry. Always with the damn worry. — February 15, 2016

More worry. Always with the damn worry.

We had Max’s Psychology evaluation with our local regional center. The Psychologist was the same initial psychologist that did not diagnose Leo with Autism. ( we went back a month later and he was diagnosed within minutes of a different Psychologist meeting him) So I have my reservations with his decision.

We also had his evaluation with our school district. They blew through it. Parts of it made me uncomfortable because they assumed he knew things without testing him. Is he smart, very much so. But there are problems, concerns, issues. And I can’t figure out how to help him right now.

His speech is slipping backward more in the past week. He is losing more initial letter sounds, he has “language” right now but most of it is not recognizable to most people. His current speech teacher said this week with his lack of words she was able to hear a very pronounced lisp and is wondering how much of that is effecting the rest of his attempted language.

The Psychologist through the regional center said he was going to write his report that his speech delay is still a huge concern and we would not lose funding for speech services. Then last week our liaison tells me that they never have funding for children over 3 for speech services. So we lose his regional center help in a month. We have an IEP meeting with the school district next month, but if they don’t find enough of a delay he will not be given services through the school district either. So there is a chance that my child, who still cannot communicate and has an overload of sensory issues will lose all services next month and I don’t know how to help him.

There are so many things with him that are worrying me.

His hands are clenched in fists almost all of the time, he can’t speak in understandable sentences, he can’t answer simple questions a better part of the time, he melts down when he gets frustrated, If a bath towel touches him he screams, washing his hair is like a wrestling match, he can’t handle that water on his head.

Every interaction with him ends up like a speech session. Trying to get him to slow down and very intentionally make his sounds. But putting them together it doesn’t happen. It’s like his mouth literally will not form certain letter sounds. I watch him fight and fight and then get frustrated and shut down. When he shuts down, it’s over. I can’t get him to even try again.

Trying to get Providers and Insurance to acknowledge his sensory processing issues is hard. And his sensory issues are so outside my scope of knowledge. Even with reading and listening to his current O.T. and trying all kinds of things I can’t get a grasp of his problems. I can tell you what sets him off, what he can’t handle. I can tell you how I try to make him comfortable with any of these things, but it doesn’t last long or at all and I feel defeated.

I want him to be able to talk to me, to tell me that something hurts or that he just doesn’t like it. I just want to be able to communicate with my little guy, and I can’t. And I don’t know how and right now my spirit is pretty squished.

So pray please, that we get some help so that I can continue to learn to help him learn and grown.

“momma whats for tomorrow…” — February 5, 2016

“momma whats for tomorrow…”

This is the first thing out of Leos mouth every morning. If he wakes up at 5 or 7 the first thing he always asks is “Momma whats for tomorrow?” Tomorrow, this time is his birthday, he turns 5 and gets to have friends and family have ice cream with him at our favorite ice cream “store”

This morning he flew, like faster than the speed of light flew out of his bedroom, naked and needing to go pee with a GIANT smile on his face:

“MOMMA, WHATS FOR TOOOOOMMMMOOOOOORRRROOOOWWWWW????” *bounce bounce bounce*

“well bud, it’s your”

“ITS MY BURTHDAY!!!!! why I gonna be 5 mommma, my burfday at the icecreamstore? wif my fwiends? and da minions? momma? TOOOO MORROOOWWWWWW??????? THATS CRAZY!”

Totally dude, it’s totally crazy. These past 5 years have seemed to move so dang fast with a learning curve the size of sun. My excitement today comes from his realization of time, and dates and the progression of both. Last year we talked for a week about his birthday. He had tutors that made his birthday week so special and then we capped it off with a party and Spiderman.

This year I told him about his birthday party about a month ago. He’s been asking the date, looking at our giant fridge calendar and counting to the square very boldly labeled “LEO IS 5”. About a month ago I got him to tell me why he needs to know what tomorrow is and what it is going to bring. He told me he gets scared if he doesn’t know. Usually we have a 10-20 minute long conversation every morning about what tomorrow is, what today is, what we are doing today and tomorrow. I’ve thought about bringing back his visual schedule, but I love how this instigates a conversation and he has to stop and think. If we’ve already talked about it 2 times I tell him I am all done but he can tell me what we are up to today and tomorrow, and he usually recalls it all pretty spot on.

So today, on the eve of his BURFDAY I’m sure the entire world will be told tomorrow is his day, that he is going to be 5 and that he is so excited. And he should be, because he is pretty amazing.

 

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Envy is such a pain — January 30, 2016

Envy is such a pain

I have a very hard time with envy. I have a lot of it in life. Not always with physical things, but with situations. I’ve got to get over it but it’s so freaking hard. There are things I wish for, I want, but we just aren’t in a place to have them.

I want:

date nights, preschool for both boys, less time alone, more financial stability, a new(er ) car, for my weight loss to progress more, to not have to meticulously budget everything, a weight set in my garage, to get out of the house more, a real vacation.

 

I envy:

people with neurotypical children (yes I know we all have struggles), couples that have scheduled date nights, couples that get to go out of town, take anniversary trips just the two of them, kids that have vacations with grandparents and aunts and uncles and cousins, families that spend lots of time together outside of houses, moms who get early morning gym time daily.

I know it’s not forever, I know I have so much but sometimes it’s just what it is. Joel will always go to work at o’dark thirty o’clock and I’ll never have early am gym time unless I can find a cheap weight bench for my garage. My children will never be neurotypical so we will have challenges above and beyond the normal things. We will always have to budget, I’ll probably never own a new car and who knows when a vacation will ever be time and financially possible.

So, this year we have two family weddings to attend, both out of town, both a financial puzzle but we will make the most of the quick trips. And we are going to camp, as many weekends as we can this summer. Even if it’s just to right outside of town. We are going to work on our sight words and writing, trying to tie our shoes and singing songs.

I’m going to figure out how to rid my mind of the envy I have of others relationships and date nights and family trips and figure out how to make the 4 of us more than enough for my heart. It’s my own battle and I need to let go of these things sometimes it’s just hard.