Dyer Family Happenings

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

Lets talk regression — September 14, 2015

Lets talk regression

Hindsight is 20/20 right. Totally is when you’re oldest child is diagnosed ASD and when you are asked if you saw a regression, you rack your brain and yup- at 2 1/2 years old there it was. Sensory overload constantly, not gaining words and phrases, saying the same phrases over and over and over and over, only knowing how to communicate via labeling.(dog, cat, momma, milk)
I keep being given weird looks and told basically that I’m off my rocker that it is again happening, at the exact same age, with Max. But today it all became very very clear at an in home ABA session. He became totally overloaded, he shut down, he started screaming and crying and shaking. If you touch him he says ouch over and over and over. This just started. He is 3 days away from being 2 1/2. He is very very slowly gaining words but it’s a fight.
And I get it. I’d be super pissed off too if I couldn’t tell you what my brain is saying. He’s smart, we are so very fortunate that both of our boys are, but he can’t get what is in his head to come out. He can’t tell me what he needs. He can’t say that he’s tired, or that his teeth hurt, or that his tummy hurts. That he can’t focus, or that he just needs a break. And at this exact age, neither could Leo.
Leo would yell. He would cry, he would ball up and rock, he would cover his ears, he would run to a safe place.
Max screams and cries, he throws things and shakes. He answers no to every question and then he burritos himself in a blanket and depending on the amount of time this has all taken he passes out.
His tutor gave me some things to try to calm him down, but we both agree that the “ouch” screaming comes because he flies into sensory overload, so even the lightest touch hurts. I can’t even begin to imagine what that must be like. To not be able to appropriately vocalize what you need, then to get so frustrated all you can do is scream, then not be able to be consoled because it physically hurts. I can’t imagine. And this is happening multiple times a day just about every day.
So I have to check myself. Remind myself that he can’t help it. That he can’t regulate, that I’m going to have to sit and rock him and sing to him and tell him it’s all okay just like I did with his brother. That we are going to have to push everyone to be more patient and take his therapy that much more seriously because I am terrified that he’s not just the super cute kid with a major speech delay. Because I don’t want this to be his normal or forever or even right now.
So here I am again praying for the strength to push through this, for the patience to open my mind and my heart to whatever God has in store for Max and our family. That Max knows that I love him and it doesn’t matter what he needs I’m going to try my hardest to give it to him.
But I’m not crazy. For better or for worse I am so very in tune to my children.

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.

The week of May 24- May30 — May 30, 2015

The week of May 24- May30

It was a busy one. I decided to take pictures all week, but just do an end of week “heres life for us this week” post 🙂

So here it is!

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Joel and I celebrate out 7th wedding anniversary tomorrow, the 31st. Tonight we get a date night!
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Leo loved the Indy 500. He was looking for McQueen the whole time
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Somehow Max grew. I don’t know how but he looks 15 times taller here than he did the night before
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This. Oh yes. Local handcrafted ice cream.
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This kid and eating my very precisely weighed out food.
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Leo has decided he’s a dancer
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Max had a rough nap wake up and Leo scratched his back to make him feel better.
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This kid has a major love of ice cream
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Leo has an eye appt on Monday, im thinking he mind need glasses, we are practicing.
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Maxs favorite things, dirt, playdough and painting
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New pool, the other one had a horrible leak. When this one goes we are investing in an above ground pool with a filter

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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.

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.

🙂

Steps forward, patience and rational thinking…. — March 18, 2015

Steps forward, patience and rational thinking….

We are embarking on yet another adventure with Leo. In September 2014, we pulled him from public school and started at home ABA therapy. He needed a stronger foundation, he needed clearer words, we needed to fine tune his dealings with sensory overload. In September I sat on my living room floor with the program manager that suggested this course of action because his class wasn’t what he was needing. We set a goal that fall 2015 he would head back to public school hopefully into an inclusion class.

It’s March, and not only are we headed back to public school on April 7th, but we are working on going into mainstream, regular public preschool through the school district. 5 months ahead of where we had hoped and prayed, faster than I had imagined. (when we pulled him from school my heart was heavy, it was such a forward and backward “progression” I wasn’t sure when or if we’d get there, and that was okay as long as he was learning).

Here’s how all of this works: (to the best of my dealings…)
Our school district has multiple levels of early education: Early Headstart (for kiddos starting at age 3, that have special needs), preschool, transitional kinder (they take the first half of a kindergarten year and stretch it across a whole year to get them ready for kinder) and then kinder.
Okay, here’s what has to happen for us- because Leo is registered as a special ed kiddo.

He is re-enrolled and starts back in a special ed classroom.

We have an I.E.P. (individual educational plan) with his teacher (who thank the Lord Almighty is the teacher he originally started with and knows him so well, AND will see his growth), school staff, his ABA tutors and us to talk about transitioning him to being a general ed kid.

Then the decision about where to place him is made.

He is moved to the appropriate classroom and we finish the school year in said classroom and start the fall in the appropriate class.

It’s a process, it took about 50 phone calls. But we are here, and in motion and that is awesome! So I started looking at the criteria for kinder. What they learn, the goals they have to meet or exceed. Um, woah. (for reference http://www.cde.ca.gov/re/cc/documents/alookatkthrugrade6.pdf )
Leo is smart. Very smart. He has trouble with things, like writing. Or rather holding a writing instrument. My mom bought us some books and things to make it fun, but that is probably his biggest struggle at the moment, and a big part of kinder. So we will be working like gang busters on it.

My hope (at the moment, or rather until he totally exceeds my wildest dreams- because he does every time) is that we start the fall in a mainstream preschool, next year he has transitional kinder and we move to kinder when he is 6. This is where I’ve set my goals for him, knowing that there will forever be things we are working on, and factoring in some set backs, but knowing that he is so very capable and has a want to learn that is something kinda fantastic.

We have the resources available to us and people that want him to soar and I couldn’t have asked for anything more for this guy.

Max is making progress with his words, but we are still behind. His advocate is going to ask for ABA services for him, and she thinks if she can get this approved and we start asap that by age 3 everything will be smooth for him. And that makes me so excited. Hopefully we will find out in the next week or so where we are at on school for him.

I never wanted to be a stay at home mom. — January 25, 2015

I never wanted to be a stay at home mom.

Yup, you heard me. But I guess before I can expand on that statement I should make a few more- that one of my bestest buddies NEVER LETS ME LIVE DOWN SAYING…
I never wanted to get married or have children. I was always good to go with being Auntie Katie drinking her cocktail and smoking her cigarette and loving and spoiling kiddos.

Then I met Joel, and fell hard, then got to know him and realized this guy made me rethink the whole wanting to get married thing. Like I could actually see myself living with him forever- say what?!?! I missed him if we were apart, he didn’t disgust me when he brushed his teeth, he was (and still is) pretty easy going, and up for adventures. I was like yeah, this guy. I asked him to marry me, and a few days later he said yes LOL. I know I know.

So we were content, started a journey moved to Spokane and one day my body told me it was time to have babies. I was like- yo uterus, check yo self. I DONT WANT KIDS. But, I totally did. So we took a leap of faith and poof Leo. And then a couple of years and a miscarriage later, poof we ended up with Max.

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When we moved back to California Leo was about 3 months old. We had to get settled in a house and get Joel back to work, and when he was 7 months old I went back to work part time. It was a nice mix- I got to hang out with my lil monkey guy and be productive in a grown up world. Then I changed jobs and went to work full time. I’m not going to lie, I was JAZZED about Leo getting to go to daycare. He’d have friends, and make crafts, he’d have holiday parties and learn songs. How exciting, and selfishly I was so excited to be bringing home a paycheck, having a reason to get schnazzed up every day and forming relationships with grown ups that I had very recently been mourning the loss of.

I lost that job about a month before Max came into the world- our company sold and I was tossed into being a full time mommy. We kept Leo in daycare for a while- he was doing so well….. and then his slide started and things changed. Max was about 3 months old when financially we had to pull Leo out of daycare. Shortly thereafter all of the testing started and we started on his journey to new ways of hearing and learning. It was a lot- a newborn and trying to shuffle him around. But I still had the desire to work. I always thought, we can get through the testing and get him into a class or school that will help him grow, I can find a job put Max in daycare and it’ll all be good.

I was dreaming.
I still dream.

I’m not going to lie. I’m 2 years into this stay at home mom job and I still don’t get it. I’m not sure if it’s different when you’re not shuttling your kids to therapies, and preparing the house daily for at home therapy, but I just don’t get it.

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Backyard fun

Don’t get me wrong- I have been BLESSED to see my kids take their first steps, say their first words, eat everything under the sun, put clothes on for the first time, blow bubbles in the bath for the first time. I am watching them grow and change. But I do feel like the world is passing me by. Like I have no way to connect to people who aren’t mommies.

I also can’t even seem to get a call back when applying for jobs. So I guess that’s a sign from God that I’m where I am suppose to be. But I still don’t totally get it.

This is not a job for the faint of heart, for the unsure, for the tenderhearted, for the tired, for the grumpy, for the perfectionist, for the holder of the O.C.D., for the foul mouthed, for the determined… or maybe it is.

It’s thankless, it is 24/7, it is all encompassing, it is repetitive, it drains everything you have in your reserves, and people choose it. CHOOSE IT. I still don’t get it. But it has chosen me. I do not believe “God never gives you more than you can handle” I believe he pushes your boundaries of comfort until you have no choice but to ask for his leadership. That struggle even in its darkest hours, when you want to throw your hands up and walk away a little something creeps in and softens that anger/hatred/mad you have at that moment. That not choosing this path but being placed on it is not happenstance, it’s not by mistake it’s because you have a gift you are not yet aware of. That you are going to meet people also on this path that are going to enrich your life, challenge your thinking, expand your heart and show you love and compassion you aren’t accustomed to being shown. It’s because it’s not about you, or me. It’s about a journey.

And while I’m on it, and I hear that women choose this I want to ask them why. Why with everything there is in this world to try to do, why would you choose this?!?!?!? And I look at my children and I know, because they are so very worth everything I could possibly offer to another human.

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So I say a prayer and thank God that my heart changed when I met my now husband, that his love made me want to build a family with him and that our beautiful children need some extra time and hands and that their needs have put me in a place I will never be comfortable with, but I know I am fully needed.

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How is it not Friday. No, really — January 16, 2015

How is it not Friday. No, really

Today was a day of trials, seeing gal pals, snuggling babies, more trials, the DMV (I guess I could be done there), more trials and now jammies. I am very happy that my jammies were waiting with baited breath for me at home tonight.

This is Leos first full week of ABA at the clinic. So prior to this- we have Wednesday and Thursday mornings to be slugs, stay in our P.J.s and get at home chores done. The past two days have been HARD. His schedule changed, and that is always hard. He has now taken to spitting at me when I tell him to do something. Great. I ask him to use his words- he screams at me. If this is what his 4th year of life is going to bring I’d like someone to reserve me a spot in the nut ward now please. He’s been doing really well at “school” this week, but I can tell he is more than tired. His dark circles are black, his acting out is horrid and his tummy isn’t great. I just wish I could get him to focus long enough to tell me if something is wrong. Lately he’s back to copying whatever I say when I ask him.

Max is sleeping almost totally through the night, and that is WONDERFUL. When he is waking up, he comes into our room snuggles in bed and falls back asleep- for the most part. Joel and I are both very confused at sleeping for more than 2-4 hours at a time and our bodies aren’t sure of how to deal with it. He isn’t using words outside of peoples names lately. Oh and screaming “MINNNNNEEEEE” at his brother 9,473,3974 times a day. Tomorrow is his first speech therapy appointment, I’m very glad for this. Non verbal is harder than having labeling words for everything under the sun. I have at least gotten him to use certain signs for things- food, more. They are helpful.

I’ve been reading more about fragile x syndrome. I had glanced at it a year ago and thought huh, yeah it does sound a LOT like Leo, but so does OCD. If anyone has any personal experience with the syndrome I’d love to talk more to you!

I think that’s about it. Back to snuggle time with my jammies.

Stuff, so very much stuff — January 8, 2015

Stuff, so very much stuff

There is always “stuff” isn’t there!?!? The “stuff” happening here is all kind of awesome. At least I think it is.
Leo has been having at home ABA therapy since September- 3 hours a day, 5 days a week. In November he started 3 days a week at the clinic that also houses a preschool, so certain things- like circle time- he was able to be included in with other kiddos, and interacting one on one with kids like him. Starting Monday he is going to be 3 hours a day 5 days a week AT THE CLINIC (to start incorporating him more into the preschool setting and working more on his social behaviors with other munchkins) and 3 hours a day 3 days a week at home! I am so proud of his growth, his words, his working through loud noises and bright lights, his mimicking, his frustration. He has listened and learned and become conditioned to certain things so well that his therapy is progressing pretty quickly. He’s such a smart dude. He just makes my heart so happy.
(In case you aren’t familiar with ABA here’s a link to describe it :http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba )

Mr. Max the Great (though he is small), starts his speech therapy next Friday. We are so very fortunate to have the same therapist that started Leo off. She is amazing and I feel like she gets me as a mom and a person. She seems to understand my worries, and for that I am grateful. She is also going to put a referral in to the O.T. (Occupational Therapy) services at his “school” to help with his sensory seeking behaviors. She thinks most of his head hitting, banging, biting are sensory seeking things and can be worked through with some O.T. help. His words are coming slowly and he still chooses to use grunts, yells, and “wassat”s for the majority of his communication, but I know he will pick up more and more words quickly.

Our van became uber unreliable when it just about took a dump on me Monday. So we sold it to someone who knows and has the ability to fix cars. We are very lucky that Joel is able to borrow a truck from work and I take over his car until we are able to purchase a new to us vehicle for me and the boys. I had been praying the van would hold out until our tax refund came in, but alas- I am not in control! (uh, duh!) This is teaching me flexibility, patience and understanding that it will all work out, its just not always when I think it should.

Today our therapy took us on an adventure with our Tutor Jordann. We took her to our favorite place- the Fresno Chaffee Zoo. Our trip lasted two and a half hours (a new record for us) and included visiting “the elephant castle”, petting every animal in the petting zoo, watching otters eat breakfast with their handlers, Leo very proudly stating to Jordann “Welcome to my fafingos” (while standing in front of the flamingo exhibit), touching sting rays, and feeding the giraffes (which he ran screaming from two months ago and totally protested doing 4 days ago). I am so proud of both of the boys for listening, being excited and wanting to learn everything they could today. And Jordann- thank you. For your enthusiasm and love. You’re amazing and I think you’ve found the most perfect career path.

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Feeding the Giraffe! 1/7/2015

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It’s amazing how the gals that come to the house twice a week feel like they have become part of our family. They celebrate every victory- big or small, they are always so excited to dive into whatever we have going on here. They mourn losses with us (we had a dog either run away or be stolen from our house a few weeks ago), they accept challenges like when I somehow think making cookies for Christmas with my two crazy toddlers is a great idea (before we started of course 😉 ) and they listen. They listen to my worries and fears, to my excitement and they remind me when my heart is a little heavy that Leo is doing so very well. I can’t thank these gals enough for being such a huge part of our world, for becoming part of our family.

Joel is working tons of hours, as per usual and always finding new ways to keep the boys entertained outside to give me a little quiet time to putter.

Personally I am embarking on a big new adventure in March. I have been on a fitness journey pretty much my whole life, but last year I kicked it up to another level and Monday I registered to run my very first 5k. I created a team and will be running to raise money for autism research. My sister is going to run with me, and I am so very excited about it! On top of that I am in my 28th week of being part of a virtual fitness challenge and have met so many amazing women. We are all on a journey to being better than we were before the challenge. I am always learning from these ladies, and was voted “MVP” of my Nov-Dec group. That totally took me by surprise. I told Joel I guess I am too hard on myself. I never feel like I’m working hard enough or making big enough strides but I guess I am.
Here’s the link if you’d like to donate to our running team!

https://www.raceforautism.org/Team/View/5074/Super-Leo