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.

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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.

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 have OCD — December 12, 2014

I have OCD

It’s undiagnosed but its there. And it gets worse when I’m stressed out. BUT it is crazy helpful with certain things, like “monitoring” when Leo has a jump backward. (There is a pattern, I’m starting to recognize it)

After he was officially diagnosed with Autism I started watching. Looking for things that set of his sensory sensitivity, that overloaded him, when we took leaps backward after climbing higher and higher. We have worked very hard through a lot of his sensory issues. Sirens, coffee grinders, lawn mowers and weed whackers he can sit through most of the time. Wild Kratts and BBC dinosaur documentaries amp him up so much that I can’t calm him back down and have been “outlawed” in our house. SpongeBob squarepants (my husband put it on for him one day, that show gives me a headache) calmed him down. say what?

So after starting school, the first big set back we had was after Spring break. The child that thrives on schedule, that can’t function without it, that demands the first thing they do at school now is make a schedule, had to function on no schedule for a week. We went back to school and he went non verbal, started hitting, screaming all of the time and it wasn’t much better at home.

Then came summer break, he had mellowed out a bit and being back on schedule helped “regulate” the tantrums and outbursts, kept his words coming, and whammo. As much as I tried to make a schedule for us- it wasn’t his normal school schedule and we fell back again. School starts, we are okay.

So breaks are the hardest. And I try to explain to him that breaks are good. But he doesn’t understand. Thanksgiving we had 5 days straight off and it’s been a fight ever since. Pair that with music, lights, shiny and Christmas everywhere. So he’s licking his hands, chewing on his fingers, biting, screaming, not listening, hitting, throwing and generally off. And I don’t always handle it well. I try to stay calm, have him look at me and talk it out, but when it’s the 80th time saying we don’t jump on the couch or hit our brother or scream or throw, I end up yelling. And I know that sets it back even more.

It drives me nuts that something that is normal, that we do everyday some days is too much, or something he can’t handle, or that he just totally shuts down and I can’t get through to him. I can’t understand it. No matter how I try to place it in a pattern or watch for what leads up to it.

I know we are going to have ups and downs, sometimes the downs just kick you in the gut.

So prayers to get through this season in one piece would be greatly appreciated.

Break? Who gets a break? — December 10, 2014

Break? Who gets a break?

No one tells you when you first become a stay at home mom that the work you did, and were paid for, is NOTHING in comparison to the work you will be doing at home. That the work at home is never ending, lacking thanks, expected, demanded, 24 hours a day 365 days a year. There is no lunch break or vacation time. That trips to target alone become the most amazing part of your month and that when you leave for an hour and a half you will come home to a disaster and your mild relaxation you just achieved will be squashed the minute you walk in the door. That every morning, even if you try your hardest to have the house picked up the night before there will be dishes in the sink, there will be toys randomly stuck places and a mountain of laundry that you know you tackled all of just the day before. Your mind never turns off, sleep isn’t restful and holiday stress adds to it all. There is always something that needs to be done, someone that needs something or to be taken somewhere. A meal to be cook, cookies to be made, therapy to be ready for, school to get to on time and appointments to fight for. Always something.

2 1/2 weeks ago we headed off to the Pediatricians office for referrals for the boys- none of which have been handled yet. Last Friday I had to take Leo to the E.R. for tummy issues- they ran tests, all of which came back fine there are no infections, his blood counts and iron look fine. But something is wrong. And until we get a damn referral from the doctor the G.I. Specialist scheduler won’t even talk to me. So now he won’t poop, at least he won’t poop in the toilet. He will poop in his pants. GIANT potty training step backward. And frustrating and gross, but I get it, I’d be pretty potty shy after having strangers look at my butt too.

Max is trying to communicate, so very hard but it’s just not happening as fast as he’d like it to. So he throw fits. Epic meltdowns. With a scream that could break glass and gives me an instant migraine. But I don’t always know what he needs. Pair that with his not wanting to sleep unless his daddy is holding him. Yeah so daddy works, and Max needs a nap during the day, but refuses to take them because daddy isn’t here to hold him. I’m not good enough to rock him to sleep so the screaming starts and almost doesn’t end. And it gives me a migraine almost instantly.

I’ve said it before and I totally mean it, I get so mad when I’m talking and my words aren’t understood so I get where both of the boys get their anger with lack of communication, but damnit. I read to them, I sing to them, we talk, we walk and talk. But it’s not working, and I don’t know how to fix it. Got a call from Max’s advocate at the regional center (the place that is suppose to get us started on speech therapy and motor skill issues for him) yesterday. The gal was very nice, but she was the 4th person I’ve told that Leo is also a client of theirs and she is the 4th person that has told me that they like to keep siblings with the same advocate and someone would call me back. Sigh. Broken communication from the place that is suppose to be teaching my children to communicate. Maybe that’s part of the problem.

I have overloaded myself with projects, as per usual and all I really want to do is cross stitch and drink coffee. Cross stitching relaxes me. I love the repetitive motion. I love how pretty the thread looks against the background, and how at first it looks like an abstract piece of art but by the end is something so beautiful. But I can’t. I have that mountain of laundry to tackle, presents to finish and wrap, cookies to bake, dinner to fix, appointments to take people to, therapy to prepare for, and a house to clean.

But there will be a day where I can. And when I can I’ll thank God for the break that I am so desperately in search of now.

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.