Dyer Family Happenings

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

“doesn’t function well in her current life” — July 30, 2015

“doesn’t function well in her current life”

Physically, yes. Physical strength is what I’ve been relying on to get me from day to day. If I can just focus on that the rest will go away. My sadness, my jealousy, my emotional exhaustion, my endless want for “normal” things. It’ll all just go away if I make myself physically strong.

And I’ve been trying, and successfully have made myself physically stronger, all while exhausting myself to keep from dealing with my emotions. And it doesn’t work. The stronger I get physically, the weaker I become emotionally. I feel so broken, so fragile. I’m sensitive to the stupidest of things, eye rolls, deep breaths, comments. My patience is so small and I cry often. Sunglasses are my savior for that.

I see pictures of friends vacations with their kids and it kills me. (I’m excited for them and love seeing their pictures) but a vacation isn’t in the cards for us for so many reasons. Therapy schedules, money, time away, house sitters- that cost money, my husbands work, totally uprooting the kids schedule. And it sucks. And I am jealous, and it hurts so bad, because I’d love to just get away from all of the normal shit and see something different. A new perspective, see the boys in a new place, leave my house for more than a few hours. I just want to leave.

Instead I get up every morning and prepare for a full day. Therapy for the boys- both in the morning and afternoon, grocery shopping, laundry, cooking, and then on certain days my paying gigs that start after I’ve put in close to a 12 hour day of being a mom and wife. And I just don’t want to do any of it.

A month ago the kids were making awesome progress. New words for Max, new sight words for Leo. Behaviors were simmering down. I somehow convinced myself that we’d grow out of needing help. That all of this autism stuff is just a right now thing, but in a year or so it’ll be good. They will have earned how to cope through things and we could be a normal family. And then they both had huge jumps back with behaviors. It hit me like a Mac truck- THIS IS FOREVER.

What the hell is wrong with me.

I know this is forever. I know that my kids are smart, but there are things that are going to be forever against them. Leo can’t handle transitions, changes, loud noises, a hairbrush brushing his head, smells. You can’t understand him when he gets excited or upset. To get him ready for a major change- like changing schools- which is happening in 19 days- a month before we have to start talking about it. And even at that, I’m trying to gear myself up mentally for the meltdowns that we are going to have with a change that big.

Max is learning words but it’s slow. I’m still convinced he can’t hear, and his repeat hearing evaluation is NOVEBER 23. The Children’s hospital in our town is a joke to get into. So until then it’s trying to find patience with his lack of words, not being able to understand what he wants and trying to get through the meltdowns from lack of communication.

So for the time being, I’ll be physically strong, emotionally broken, jealous of families that get time together, hating the fact that my kids have to struggle. I’ll smile because I have to, pack my days with tons of routine to ward off melt downs, and physically exhaust myself in the hopes of being too tired to deal with my emotions.

Maybe tomorrow, or in a week, or in a year I’ll feel different.

Unreasonable expectations — February 20, 2015

Unreasonable expectations

I have them.
Daily.
I have them for myself, for my husband, for my children and even for my dog.
The funny thing is that I know in my brain that what I think should happen is ridiculous but for some reason my heart still wants them.
Logically:

the dog is going to bark at our mail lady- even though it’s been (just about) the same person, at just about the same time 6 days a week for 3 1/2 years.

Joel is going to be exhausted after work and I try to keep his “to do” list short, and focus on family time but there are days I feel like it’s not enough.

There will daily be at LEAST 2 loads of laundry. And if I slack on it for a couple of days there are then 100. So I should do it daily right?

The boys are going to want to play until they are so tired they fall over, I know this, I try to intercede and head off the massive screaming melt down of exhaustion by requesting “quiet time” in the hope of them settling down to rest. They are 4 and almost 2, they don’t care about sleep, they don’t want to sleep- they are sure they are going to miss something.

I should be further along in my weight loss. I should be able to run a 5k by now, I’ve been working at this for so long- why am I still in size 14 pant?

WHY do I keep getting myself worked up about these things. Why. because I feel the need to traffic direct anything I can. Because I feel like I can’t control so many things (ASD, Sensory freak outs, lack of words, screaming because we can’t talk, health issues, when the sun sets, what time Costco opens, how many people are going to cut me off taking Leo to school) that I feel like I have to have a choke hold on a few things to balance it out. And all I am doing is choking myself.

I pray daily that God calms my heart, softens me to the things that make me rigid, that he will help relax the control issues I have. Somedays he does, others he lets me fight it out.

Leo had to have an EEG Tuesday, it sucked. And I am having a hard time getting passed it.
Logic: He made it through, he did what they needed, we should have the results soon.
Emotion: I have to fully physically restrain him for the first time in a year, The tech was so gruff and told him over and over and over “he couldn’t cry and scream because of other kids at the clinic” (my thought- f the other kids dude, how about you focus on my freaked out one), I wasn’t prepared for the setting or the testing they way I wish I could have been to talk to Leo about it more, I feel like I failed him because we took 300 steps backward for a few days after having the test done.

Max has been saying more single words, and having worse and worse melt downs and tantrums when the words don’t come out. He’s also having worse gas issues. So we are trying lactaid again, tried coconut milk and he looked at me like I had lost my ever loving mind calling it “milk”. I read to him all of the time. We sit and look at one another trying to make words sounds, and it’s all just stuck, and hes mad, and I feel like I am failing him.

And none of this is logical, because we are all alive, working toward goals of understanding, breathing through uncomfortable stuffs and learning, but when the boys struggle I feel like it’s a personal reflection on me. The person that is with them just about 24 hours a day, the person that should be guiding them to daily success

UNREASONABLE EXPECTATIONS

How do I pull myself away from them? I celebrate successes, but why are the set backs like a gut punch?
Gotta figure this out.

For my family

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Because they deserve more than I give them. Because God saw in his plan for these amazing creatures to be part of my world, and I need to remember that my need for order doesn’t matter when it comes to the happiness of my boys.

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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Max — November 20, 2014

Max

Max is 20 months and now 3 days old.

He tested at 21 months for gross motor skills- the nurse said you can tell he has a big brother to run after, 18 months for fine motor skills, 13 months for receptive language and 11 months for expressive language. He also failed his mChat Autism screen.

What this all means. He is developmentally delayed pretty much across the board.  I knew his language was behind but I didn’t think by this much. It does become more apparent when I see friends kiddos that are the same age and hear what they are saying and realize that Max isn’t even close to matching 50% of their words. The mChat screening isn’t just the child is not meeting these milestones, but the lack of certain “normal” characteristics. There are 20 questions, 5 of which are “crticial” (put the risk factor up high) anything over 3 answers missed out of the twenty- or any two missed in the critical category scores your child as having a risk for being diagnosed at age 3. Max missed 9 total.

The Providers that evaluated him yesterday said they think with early intervention he will hopefully pull his scores up. That it seems like he has more words than we with he does- they are all just sounding the same right now, that maybe with finding his words his aggression and head hitting and screaming will relax and we can see if there is actual concern. His eye contact is good, he seems to understand things some of the time and can follow a simple command every so often.

So now we wait to be assigned an advocate- they are going to try to get him in with Leos so I am only having to have one contact person. And we wait to be placed into a place for therapy.

So I promised I was going to be honest right? Here goes. (I want to preface this entire next section by saying that I am fully aware that my boys are two different beings, that their journeys in life are different but there are some similarities in them right now that shake my core)

Max is almost at the age that Leo regressed. I didn’t realize it at the time, but looking back there was a definite marker for stopped progression in his everything. When  Leo was Maxs age he had eye contact, he had lots of labeling words, he was sweet (still is) his tantrums seemed appropriate for where he was at and what he was doing. Then everything stopped. He lost his eye contact, he stopped gaining words and started making more sounds. Things that he was fine with made him have a full body melt down. he couldn’t function around other kids. We went trough his evaluation-( he was about 26 months old when we found out he couldn’t hear, then eval then tubes). and the same things were said- he’s smart, he failed his mChat,  once his tubes are settled and he can hear with some speech therapy we should be able to bring him above all of his deficits. And he gained words. And when the words came so did other things I wasn’t expecting.

Then came the sensory issues- that he couldn’t tell me what was wrong but he couldn’t and still sometimes can’t function in certain situations. I have had to restrain him more times that I would like to talk about, physically to stop him from throwing himself or something at another person. There are stores we just don’t go to because I can’t handle both of them having a melt down. Leo is strong, and with that when the melt down comes and I have things thrown at me, or I’m being hit, or trying to pick him up it trashes my body. He is 54lbs of tank child, add in flailing and punching and it feels like 400.

Most people don’t see this side of him, because I keep a tight reign on him when we are out or we pretty much only go places I know we can have a chat if we need to and it won’t go into fully hysterics. So what if these same things happen with Max?

How in the world is there enough time to get them where they need to be, to get them both the help they need, to find the places he will feel comfortable, then try to get them both to be comfortable in one anothers comfy places so we can leave the house. How am I going to deal with the looks and the comments from people that don’t understand when they are BOTH having a rough time. How am I going to be able to make them both know how special they are, how it’s okay and we will work hard but sometimes Mommy is going to cry, that sometimes Mommy isn’t going to handle things the right way. That sometimes Mommy isn’t going to know how to help them. How?

I am scared

The sweetest words from someone so very special. — October 1, 2014

The sweetest words from someone so very special.

I’ve made comments before about not being a “girls girl” and I’m really not, but I am a total “Moms mom”. I’ve found myself more connected to  other moms since becoming one myself. I am blessed to have a handful I talk to and see frequently, and  a couple that I am able to be me with. I can be honest, I can be me. I can flip out when I need to. I can cry, I can question, I can pray, vent, eat, hug and love. I am so lucky. But there is one that is at the head of the pack that I never give enough credit to.

My Mom.

Yesterday when I was aprehensive about how the day was going to go I pick up my phone to a voicemail. In that voicemail was everything I needed to hear, and hearing them from my Mom they resinated even louder.

She taught me to work hard. To keep a tidy home, to always make people feel comfortable and welcome in that home. She taught me that the holidays are about being together and eating amazing food. She taught me to love hard. I’ve watched her fight for things she believes in, work hard for what she has, and has been in a loving marriage for quite a long time.

Child rearing is hard, I’ve said that before. And when you get a message that reassures that you are doing exactly what you should be, and that your kids are wonderful, to relax and breathe and it’ll all be okay from your Mom it takes 1,000lbs of pressure off of your shoulders. Because the people that matter see what you’re doing and think you’re rocking it.

Thank you Mom. I’m never deleting that message, and when I start to feel low I’m going to listen to it and know that it’s all good.

I love you.

One step forward, a fall down a mountain backward. — September 29, 2014

One step forward, a fall down a mountain backward.

Fridays therapy was a little rough, but with me having a little more hands on with Leo he rode his tricycle- using the pedals and steering the handles bars, and he held a marker, the correct way in his left hand and drew a circle!

Saturday he was amazing. We spent  hours at the zoo with my family, played in our backyard, danced, listened to music, read books.

And then today happened. He woke up okay. We had an amazing early morning rainstorm comlpete with thunder and lightening. He twirled in the pouring rain with me. He asked for something to eat- pizza to be exact- I said sure thing and toaster ovened some. When the time came for him to sit and eat, he threw pizza. Then his language started slipping. Sometimes he would use a word but the majorty of today was jibberish and sounds. No using “I” sentences. He was loud, he was all over the place. He’s been potty trained for a month now, today you would’t have known it. He peed his pants 5 times, we had to have a 30 minute “no you’re not getting off the toilet until you poop” stand off. (All the while he’s telling me- it’s okay Momma I poop on the grass. No child, you’re not a puppy) We had some ugly at church tonight. *sigh*

I am frustrated, my heart hurts, I am lost and mad. Days like these crush my hopes, make me wonder if we are actually making progress, make me wonder if I’m doing the right thing for him. And right now it sure as hell doesn’t feel like it. And while I’m griping, I am sick of looks from other moms when Leo is stimming or having a rough time, I am sick of having to say- “he’s autistic”. I am sick of judgement.

I feel like I should wear a tshirt that says “yes, he’s autistic” and then I wouldn’t have to say it. I know that our struggles with Leo have made me much more sensitive to other kids that might be having a rough time. I try to smile at the mom or dad that is wrestling them, or having to pull them aside or nurse a hurt. it’s that look of, if I could hug you and tell you you’re amazing I would.

Child rearing is hard. Everyone has an idea of what is best for your kids. I know deep in my gut (and because I pray every night for God to continue to lead us on the right path for Leo) that we are doing the right thing, I know for every success we are going to have multiple  failures, I know he is amazing and that God has an amazing plan for Leo. But right now I feel like crying.

And Mr. Max, his words are getting to be so many. The way he not only holds a sppon but can actually scoop is amazing. His wiggle walk is just about the cutest thing I’ve ever seen. (He kinda like a bulldog) There are things he does that send my autism feelers on overload. (This is right about when Leo took a jump back/ complete stop in gainsin language and motor skills).

It’s time for bed.I’m on emotional overload. Tomorrow has to be better, I’m going to try my hardest to make it better.