Dyer Family Happenings

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

I’m not a fighter — February 23, 2016

I’m not a fighter

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

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

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

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

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

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

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

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

More worry. Always with the damn worry.

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

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

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

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

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

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

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

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

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

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

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

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.

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.