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.

 

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

 

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.

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.

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

Faith, love and lowering expectations — July 11, 2015

Faith, love and lowering expectations

Every morning the boys and I say a prayer out loud together:

“Heavenly Father thank you for this beautiful day for learning and for love. In Jesus’ name, Amen”

That’s it. My hope is that the boys will realize that the world doesn’t revolve around them. That there are other hands that make things happen and that we need to not just BE thankful for those hands but we need to TELL those hands we are thankful for them. In toddler world I have no clue if it resonates but we are gonna keep saying it every day.

There have been giant leaps in our household- Leo swimming without a vest or floaties, Max using 2 word sentences more and more, Leo can (in his own almost legible way) write his name without hand over hand help or a drawn guide, Max is growing (I’m pretty sure his feet grew two sizes over night), Leo is mastering sight words (reading here we come!!!!) and Max is conquering his fear of swimming pools.

At the same time we have had some ugly stuff- Leo overhead throwing a chair at school, Max having a full blown screaming/ stiff body meltdown because he needed to finish a task before he got his blanket back, not eating, throwing, hitting, screaming, pinching, ugly words.

My guess is that all parents have these issues with their toddlers. Always pushing boundaries, my hope is that they don’t have them to the extreme we have them here, I don’t wish that on anyone.

I joke(but I’m really serious) that I could do physical labor all day everyday and I’d be tired but Id pull through it, but the emotional drain of dealing with behaviors from my kids wipes me out. It drains every bit of strength, every bit of positivity, every bit of patience I have. And I really need to work on that.

The good days make me excited for the possibility of new growth and learning and the horrific moments knock me down. I feel like I start to expect too much from my kids and then I am let down when they aren’t up to my expectations and that is so wrong on my part. Yes, I need to have expectations of them, and yes they should be just outside of their reach and comfort zone, but I should not be placing 7 year old expectations on my 4 year old and I feel like that’s what I do when he fails. And when he fails he is crushed and his world ends. You can see it across his face. He is just like his mommy with wearing his emotions out in the open so everyone knows.

In these moments I am learning to back off, to lower my expectations to attainable things and to love my children. More importantly to make sure I TELL them I love them. They need to hear those words out of my mouth more. They need to know that I love them, even after awful behavior, they need to hear that I love them even when they act out in ways that embarrass me and break me down, and hurt my heart. They need to know that I will love them as I teach them these things are not okay, that they will happen but that we can find a better way to tackle the situation. That it doesn’t matter what happens my love for them is for always.

And I don’t TELL them this enough. Because I’m embarrassed. Because my heart hurts. Because I am emotionally drained. Because …. because nothing.

1Peter 4:8 “Above all, love each other deeply,1 because love covers over a multitude of sins.”

“Heavenly Father thank you for this beautiful day for learning and for love. In Jesus’ name, Amen”

Backward, yet again — April 29, 2015

Backward, yet again

We can’t afford private school.

Even if I figured out how to pay for it and daycare for Max and found a job that would pay me more than 9 bucks an hour, there is no way we can afford it.

Leo will be placed in an inclusion preschool (where a portion of the kids are general ed kids and the other portion are special needs, but high functioning and require peer models for success), and he will be scheduled back with ABA 25 hours a week after June 11, when the school year is over. But until then he is in a mild to moderate special ed class. A class where there are very few words- other than his, and his right now are ugly and mean and accompanied by hitting, spitting and as of today trying to push a bookshelf over.

I don’t know what to do.

We talked at length about how this move may very well set him back. I had no idea how much. It’s a fight to get him to wear clothes again. He is constantly pinching himself and walking on his toes. He is jumping and flapping so much more than he ever has. It’s a fight to get him to be consistent with sentences other than “I be by myself”, the sensory overload is the worst it’s ever been. And I can’t help him. I try to have quiet time, I try to have him talk to me, but everything is so ugly. His words and actions to me, to his teachers, to his peers, to his brother.

He is not a mean kid. He is a lover. He is a mediator. He can tame skiddish animals. I just don’t understand it. And I feel like I am at a breaking point. The only thing they are able to do at school his put him in the thinking chair, and it doesn’t work. I want my kid back. And he will come back, but a month an a half seems like a lifetime away right now.

The realization that his is going to always have issues with sensory overload and transitions hit me about a week ago. And I cried. I’m not sure how he is going to do in Junior High school where you change classes every 45 minutes, when changing stations every 10 minutes is accompanied by a huge meltdown. How holding a pencil is the end of the world. How a fire drill is the most painful thing to his ears and eyes. How do I teach him that these things are okay, that they won’t hurt him, and that they are a part of life.

Is it all going to click one day? I pray everyday that it will. Or that it won’t hurt as much, that it won’t be as hard to move from thing to thing, place to place. I pray everyday that even if he doesn’t totally understand why we do what we do he wants to try.

Sensory overload can kiss my rear end.
It’s the one thing in the world I truly hate.

My world of A.B.A. — April 3, 2015

My world of A.B.A.

I want to start this post off with a disclaimer- I am not a professional, I have not been involved with ABA for years and years. I am just a Momma that has seen so many benefits of ABA in my child and would like to share my experiences and strategies for success with ABA with everyone (or rather anyone that wants to read this 🙂 )

The site I’m referencing: http://www.appliedbehavioralstrategies.com/what-is-aba.html

What is ABA?
“Applied Behavior Analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior”

In Momma terms- It’s a group of people that help teach your kiddo how to work through behaviors. How to redirect behaviors that are potentially harmful both physically and socially. For us this was using a method of ignoring and being a body block to Leo when he was frustrated or on sensory overload. If the behavior wasn’t physically harming himself or another (screaming, using ugly words, general protesting) the behavior was ignored, and positive praise was given to another person for being quiet and participating in whatever the task is. If he was trying to hit, or kick or throw or pinch or punch then either myself or the tutor would place their body in between Leo and his target. No words would be said, you are literally just using your body as a shield. (This one was SOOOOOO HARD FOR ME. If he hauled off and smacked someone, my first instinct was to smack his hand or his butt. But that method didn’t work. Ignoring totally did)

On top of that was teaching him some key phrases that helped with his transitions- “first/ then” is a HUGE one. (First circle time then milk) Always short and to the point, and he adjusted to this quickly and pretty well.

Leo understands full sentences, he understands when I explain things in detail, but when we are either on the edge of a melt down or in one- the shorter the phrase the better off we are. It’s direct, it’s to the point, it addresses his wants and what is expected of him. It’s crazy effective.

The Tutors.
So we have 4 tutors currently, each one has a different approach and brings out different things in Leo. One has helped his imagination take shape, they go on adventures, they make up stories, the are high energy all of the time. Another has gotten him to focus (a bit) on art and not protest like crazy when making projects. She also helped get him to try new foods and to let her know that squeezes and “Leo burrito” help him feel better. Another has helped with his social at school, and the last shares a love of reptiles, and play, talking and asking and dancing.

They are gold. Trust them. Ask questions. Listen to them. Learn everything you can from them. But most of all- continue what they do in the few hours they are with your kiddo when they aren’t around. Consistency is KEY to growth through ABA.

As parents I think sometimes we think we know whats best for our kids. And I’ll agree with that 80% of the time. But I think we also become to encapsulated in our world, making them feel better after a tantrum or melt down, being the only ones that can understand their words at times, being complacent with the 3 brown foods they will eat, that we can be our kids biggest “holder backers” (yeah I have awesome language skills).

It becomes easy and comfortable for us to continue with what is “working”. But really it isn’t working. ABA is intense. It is emotionally demanding. It is frustrating. It is a team effort. It takes stepping outside of comfort zones. It takes wanting to learn with your kiddo. It takes strength. It is amazing.

If anyone has questions about ABA or my thoughts in more detail about specifics I’d love to answer them.

🙂