Untitled: At A Loss For Words.

It’s been a long week.

Truthfully, it’s been a long few weeks.

After my getting Influenza A/h1n1, I thought I started to feel better after a few days. I’m still sleepy, and sore, but definitely no 104 degree temperature.

Then there was Danny. He got a fever Wednesday night, and woke up Thursday morning with a 103.5 degree temperature. We took him to the doctor immediately who of course, assumed it was Influenza, (it was), and gave him some tamiflu, as well as for Richie so he didn’t get it. Later that day got worse though, and Danny could hardly wake up, his fever wouldn’t break, and then he says: “Mama, my neck hurts. Mama, I can’t move it.”

I had been texting my friend, (thanks Kelli!!), at the same time about the fever, and she was texting me back. Then I texted her the info on the neck part of it, and I don’t think I had any sooner pressed “send” on my phone, that she was calling me saying, “ER, NOW!”

So, off to the ER with a quick text to both sides of grandparents, and my sister. Danny was hardly responding, and his fever was still going strong despite any meds. The nurses were great and moved fast. Poor kid had to have his nose swabbed (freaking ouch!), and get blood drawn. It came back that he did NOT have meningitis, just h1n1, and with no relief from his fever his whole body was stiff and he was just having trouble moving.

We hung out there for a while, and they sent us home later that evening, telling me that a couple of more doses of tamiflu would have him back to his normal self. As you can see,  Danny on Thursday:

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Boy, they were not kidding. Danny was more than back to normal the next day, no fever, no nothing. I couldn’t get the kid to sit still because I still wanted him to rest. One can only do so much though. So Danny set out to clean the couches (he wanted them shiny):

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I’m telling ya, tamiflu in worth it’s weight in gold, literally. He is definitely better, and ready for school tomorrow, no doubt about it.

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After these couple of goods days, I manage to get myself strep throat and double ear infections. I definitely feel like my body is mad at me right now, although why, is unbeknownst to me.

So there is the sick part of it all.

Onto the Autism.

My little Richie… Oooooh, my little Richie.

I may have been deathly sick this week with h1n1 and Danny too, but I wouldn’t question for a moment that Richie has had it harder. Two nights ago, my Facebook status read:

“Some days are good, other days are bad. Then there are days where I want to shake my fists at God and scream at the top of my lungs how much I hate Autism. Today is that day.”

Then, while trolling things related to autism, trying to find something motivational, inspiring, or just another parent who get its, I found this:

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So, okay, I definitely have other parents out there who clearly get it.

This whole week has been leading to Richie’s downfall. My being sick and not present, Austin not working and throwing off that schedule, Danny getting sick and being home, while Richie goes to school. It may sound like small things, but schedule and normalcy is vital to his day going smoothly. One wrong person out-of-place, one thing timed incorrectly, even a SMELL, can throw his day for a loop.

Richie hasn’t been eating much so Austin and I decided to make pasta. It’s his FAVORITE meal, hands down. However, we always have too much sauce to pasta and never enough for leftovers so we threw in two boxes of pasta… two different kinds of pasta. First mistake. Second mistake, not telling Richie that’s what dinner was going to look like, because had he been ready for a “surprise”, he may not have lost it to the extent he did.

I put the plate in front of him, he was jumping up and down, he couldn’t wait to eat, and then he looks at it, runs away, starts crying, and says how he can’t eat it, he can’t eat, he can’t eat it. I realize what is happening right away and try to get him to tell me which part of it he doesn’t like. I already knew it was the colored rotini, because penne pasta is the only kind he will eat. It was too late though, he was gone.

I hadn’t seen him get that way in a long time. He wouldn’t let me touch him. He wouldn’t let me get close to him. He held his hands out, at arm’s length, as if to stay “stop”. When I would try to walk to him he would cry, “don’t touch me, don’t touch me, don’t touch me”.

As a parent… it literally takes the breath out of you. You have this amazing, wonderful little boy, who has lost complete control over his body and senses, and you can’t even hug him and tell him it’s okay. He’s hurting, literally, it can be physically painful for someone with Autism and Sensory Processing Disorder to feel that way. It’s just an overload.

Every time Danny or I even look at him, he gets worse, and he started to flap and bounce back from one foot to the other, and you could just see all the ASD and SPD come out of him in the worst way.

I sat in the rocking chair, completely slumped over; defeated. I didn’t know what to do. Austin had to leave for work at the same time all of this started happening which only compounded it all, because Austin had been home for a week, and was now gone, and I’m sure Richie didn’t get that routine change either.

So there we have it. Richie is inconsolable over a minor change, and I’m defeated, lost, and trying to stop the tears from overflowing my eye lids.

I have people ask me, “isn’t it hard raising someone autistic?”, or “how do you do it”?

The thing is, I just do. Austin just does. It’s not hard on us, it’s hard on him. I would sit here a thousand times over feeling the burden and pain weighing on my heart of watching Richie not be able to process things the right way, if that meant Richie wouldn’t have to feel this way anymore. The only thing “hard” about autism is having to watch your child go through it, and knowing it’s hard for them. Otherwise? I’m just a parent. I’m just doing what’s best for my child. Isn’t that what anyone else would do for their’s? I’m not the one affected; Richie is.

Maybe some of you are out there thinking, “This? Over pasta?”

Bite me. It’s not about an uncontrollable child. It’s not about disciplining more, or punishment. Trust me, it wouldn’t do anything. Richie is not acting up, he is acting out for help because his body literally can’t process all the changes. Richie is a very well-behaved child, and anyone who knows him will say that too.

Back to the Pasta Saga. After 15 minutes or so, with all his odd little behaviors starting to come out, I sit there and yell at myself in my head, “I don’t know what to do!” It is so painful not being able to help your kid. Here is Richie, standing there, having this freak out, and he’s looking at me, and although unable to talk now, if he could have, I swear to you he would have said, “help me, squeeze me, make me feel better, do something” because that’s what his eyes were telling me, even though his body was telling him something completely different.

I said screw it. I told Danny to go upstairs and get Richie’s weighted blanket. I ran over to Richie, who tried to run from me, and he screamed, and kicked at me, and said no. I shushed him and said things would be okay, to just let me try.

You have to let me try.

I laid him on the couch, grabbed the weighted blanket from Danny, and threw it over Richie, while tucking in the sides. Then Danny and I walked away. We didn’t look at him, we didn’t talk to him, we didn’t try to sit by him. He cried for a few more minutes, but he didn’t try to move. After 3 minutes he let out a deep breath and wiggled down into his blanket more.

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I looked at Danny, and raised my eyebrows as he smiled back at me. He came over and gave me a tight hug, and climbed in my lap. Sometimes I forget how much of this Danny feels too. He loves his brother dearly, and there are many times that Danny alone can calm down Richie by getting him involved in play. This time, though, we were all helpless, and I could tell by the worrisome look on Danny’s face that he was just as relieved as me that his brother was starting to find his center.

Ten or so minutes later, Danny got up so I could go sit on the couch by Richie. Richie looked at me, and although I studied his face, he wasn’t letting anything on. I waited. Every few minutes I would move closer to him. I would keep studying his face, and he would give me nothing.

Then. Then, I finally got right next to him, reached out slowly to put my arm around him, while watching his face, and he didn’t protest. So I pulled him toward me, wrapped my arms around him, kissed his head, and let out the breath that I realized I had been holding this whole time. He nuzzled into me, and grazed his head on my mouth which is his way of asking for kisses.

Did I learn something? I’m not sure. Next time will probably be different. Did I learn that although I love everything about my little guy, and every quirk, that sometimes as bad as it might sound, I hate autism? Yep.

I learned that it’s unfair. My child shouldn’t have to go through this.

Am I resolved to soak in as much research, guides, and help from other Autism Parents as much as possible? Damn right. However, that is the unfair part. The puzzle of it all. I can read till my eyes glaze over, but that doesn’t mean anything I find will be of any use to Richie.

I suppose, if I had to say one thing I learned for certain, is that there are going to be definite times where there is nothing I can do, and I am left helpless. This is a hard thing to swallow. My motherly instinct can’t even carry me on all of this, and I depend on that constantly. There are just going to be times that are out of control, for no reason, or even a big one.

The rest of the week with Richie was hard at school. He wasn’t as happy. Home was hard. He was lining up cars constantly.

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Sometimes it’s the only thing that calms him down. He also didn’t even want pictures taken of him this week…

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He kept pushing it away. It’s all “normal” for autism, I understand that. Sure as hell doesn’t make it easy.

The night of the Pasta Saga I went to my room, and cried for a bit. Talked to my sister. Stared at the ceiling. Then decided I just needed to keep busy, so I made these:

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It’s a pretty calming project. Pulling the Paracord knots super tight can be tiresome after a while, so it gets out the excess frustration.

Even going back and reading this, I have no idea what to title this post. It makes me feel so angry, and so sad at the same time. Life can just be day-to-day life with Danny and I being sick, and then, pain, sadness, and chaos at a breath of Richie’s Autism.

There’s just no words.

 

Who said life wasn’t easy- TAKE TWO!

I’m a music person. Just am. This is what I listened to as I wrote this. It’s Glee, but it’s good!

Take Two is better anyway, so scroll all the way down, there’s been changes!

I have disappeared from this world. Meh. What can you do? With some nudging from she-who-will-not-be-named I am back here writing again. Frankly, if I stop, y’all just go out and start spamming the heck out of my inbox, k?

As far as the last few months… I could spend pages and pages and pages catching you up, but I won’t. We’re alive. We are healthy. We are here. Capiche?
(Total side note, what is your preferred way of spelling capiche? There seems to be dozens of ways to do so, correct or not).

I’ll start with the basics as of this week, if that works for everyone.

Danny has had quite a few fabulous weeks at school with no run ins with his teachers and he is listening well, so yay Mr. Dan. I think he’s being challenged quite a bit now, too. For Valentine’s Day, he made Austin and I these:

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Couldn’t ask for a better kiddo. He is doing well with all of this Richie business. He handles Richie so well, and is so patient. Austin and I certainly are not the only ones learning which idiosyncrasy will get Richie up off the floor and stopping crying.

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Richie…well Richie has been the tough one these last few weeks–and well, months. He has received an Education Verification of Autism through the school, that was administered by two autism experts from Kearney, the speech pathologist, occupation therapist, head of the SPED-Special Educational Department, the school principal, school psychologist, Richie’s preschool teacher, and finally, Austin and I. It was determined that he is High Functioning, which is good. High Functioning is sort of the new term for Asperger’s, which is no longer used in the medical community.

They administrated a type of test for Richie called ADOS – The Autism Diagnostic Observation Schedule. That “test” is what was used to say Richie fell on the Autism Spectrum, because don’t forget kids that may make certain amounts of eye contact, and even like to cuddle, like my little Richie does, doesn’t mean he isn’t on the spectrum. Like ‘they’ say, “When you’ve met one child with Autism, you’ve met one child with Autism.” Get it? 😉

So Educational Verification, MDT report (Multidisciplinary report), IEP (individualized education program) all in hand, and as Richie like’s to say about EVERYTHING, CHECK!, we then take his paperwork to a doctor in North Platte who observes Richie, very thoroughly reads the ADOS and everything else, says it was done impeccably, and one of the most thorough ones he has looked over. Go McCook Public Schools!! Richie is now Education Verified (EV) and Medically diagnosed as Autistic. High Functioning. (Good.)

Let me clear a few things up before I move onto the services that he will receive through this.

Richie has Autism. Autism does not have him. Since I guess there are many people out there, including my own friends and family trying to find the most politically correct way to talk about this, I’ll just tell you! 🙂

Richie is not an “Aussie” I hate that, it makes him sound like he’s from Australia.

Richie is not AN autistic Richie IS autistic.

Many parents don’t like many things but I am fairly flexible as this goes, as long as you don’t go “The Autistic Boy.”

Richie has autism, Richie is autistic, etc, etc, is fine. And never be afraid to ask! Believe it or not, we don’t really get tired of the questions, because we see it as you trying to understand our child better! 🙂

Be forewarned though, many parents aren’t as flexible.

On another note…

Richie is a boy, that is NOT a requirement for Autism.

Richie does talk as best he can: talking doesn’t mean he is not Autistic.

Richie will make eye contact, goof-ball or no, but YES, still is autistic. (He was being a scalawag here!)

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Richie is even pretty tender-hearted with his family, and I call him my second skin children with autism (the proper way to say versus autistic child, by the way), don’t have to be withdrawn and act as if they don’t like their parents or can’t show affection.

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It’s a spectrum people!

Austin and I were even at an urgent care a few weeks ago for an ear infection Richie had but he wasn’t cooperating. Austin apologized and explained Richie was autistic (I’m flexible). The doctor then looked at us, no joke, an MD people! And said,

“He doesn’t look autistic, who told you that”?

I lowered my eyebrows, and threw out the laundry list of people who have told us he is autistic and if it wasn’t for the realization that I would have to hear this stereotype over and over, why would I waste, “What are your credentials again, and oh, remind me what autism looks like, I seem to have missed that fact” on the guy I needed to treat my kids nasty ear infection? So I just left it at that, and he didn’t say anything else.

On the other hand, some awful women in Wal-Mart was shooting me the dirtiest looks ever when Richie was having a sensory overload and throwing a fit. I mentioned in passing that he was autistic, sorry for the noise. She stopped walking and looked at me, looked at Richie, then looked at me. She then said, “He doesn’t look autistic.”

I paused and stared back. Blinked a few.

Then asked her, “What does ignorance look like?”

Gave her the sweetest smile I could muster and walked away.

Bygones.

Sorry, folks, some of you might think it was uncalled for but this is my baby we are talking about and I am just SICK of the comments and dirty looks, and pure and simple, sometimes I just can’t help myself! So I walked out, with a smile on my face in tow.

Anyway, back to the services thing. Richie will be receiving speech and occupational therapies through his preschool at the McCook Public School. We will also be receiving help for more home-based issues that come up through the doctor in North Platte. I really feel like we are making progress. Richie still has days like this, quite frequently and I imagine he will always be the boy off to the side, because socializing is just too painful for him:

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But he is starting to come a long way at school. He can put his own coat on now, minus the zipping. He is finally able to cut things with scissors with the teacher’s help, and he wouldn’t do any kind of coloring craft before.

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The white hand in the middle of the heart is actually Richie’s hand, but it’s in the sign for “I love you” in American Sign Language. They teach all the kids at preschool.

Danny, the little champ, is amazing. He handles this perfectly, and realistically, is probably more grown up then he should be. He receives perfect grades at school and is involved in the accelerated reading program. He loves his class. He did start wrestling this quarter, and will be starting soccer in a few weeks. CCD is also our every Wednesday thing now.

First report card:

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A few other projects he has brought home:

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Austin, as I expected is loving small town living, and small town policing. The man was made for it. He simply loves it here. He likes all the guys and gals he works with, as I do, and on that front, we really couldn’t have asked to walk into a better situation.   He’s proud of himself, and of course, as well are the boys and me of course!

Danny wanted to bring Police Officer Daddy for show and tell, for those of you who didn’t know.

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As for me…well, I’m not a country girl at heart. I’m just not. Tried to embrace it, get the hang of it. My heart just belongs in a city. I’ll stay here, and be happy here, because I have my boys and husband, but make no mistake, I miss all you guys on the East, and it makes my heart ache still more than words can express.

The words, home is where is the heart is, have never been so true, as they are now.

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