Our everyday

It is THAT time of year again.

It is almost April, and that means you will see and hear all things autism for a WHOLE MONTH.

However, autism doesn’t begin and end in April though. For many of us, autism is year round. Autism is our everyday.

Autism is not a thing to be feared. Our loved ones need to be embraced. They need to be accepted. They need to be understood.

Do you not know much about autism? Do you have a question about autism? Ask an autistic. Ask a parent, sibling or caregiver of an autistic child. My bet is that if you did, your questions would be welcomed because:

Autism is our everyday.

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That beautiful face you see up there, he is my son Michael.

Does he have ups and downs? Of course. We all do at one point or another.

But…he is happy. He is smart.  He has a magnetic personality. He has a smile that can melt your heart. He is one of the most caring and empathetic people I know. I love him more than life itself, as I do all three of my children. He is a face of autism. He is our everday, and I wouldn’t change that for the world.

#AutismIsOurEverday

***Want to learn more about autism? This link is a great reference: http://m.wikihow.com/Explain-Autism-to-People

The view was amazing

Friday was “Dress up as your favorite book character day” at school. Michael wanted to be Baby Bird, from the book Are You My Mother. I posted this picture last week:

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He didn’t want a real costume so I made him that. He loved his wings, and was so excited to go to school and show them off.

What I didn’t realize until he got home from school, was that he really WAS going to get to show them off. Jordan began to tell me that there was a contest in school. Children were picked from each class and brought up on stage. Well….Michael was picked!

A friend of mine, Jessie, saw the picture I posted and sent me this message about what her son Owen said:

“I think Michael should have won the contest.  I dont know his last name, but he was at our bus stop.  It wasn’t just his costume, it was the way he walked across the stage, he did so well”.

As I read that message to my husband, I could not hold back my tears. What a sweet thing Owen said. He has a heart of gold. And…AND, I imagined Michael walking across that stage…beaming..so proud of himself.

I have been crying an ugly cry, with happy tears, while writing this.

I wish I had gotten to see that moment. But, thanks to Owen, I got to see it through his eyes…and the view was amazing.

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***Many thanks to Jessie for sharing her conversation with Owen, with me***

Life is a Wiggle

Yesterday was IEP day. It always causes me anxiety and stress. It was the reason that this meme was born:

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In the days leading up to it I try to mentally prepare myself for it. I have to admit, I can’t say I have really ever had a bad experience. For that, I am grateful. I really do feel that his team has always had his best interests at heart.

It is just the whole process that puts me on edge. It makes me feel..anxious, uneasy and uncomfortable. I have always attended the meetings alone. Unless of course you count last year. Jordan, my 6 year old at the time, had to come with me. I jokingly called her my “Little Enforcer”.

Yesterday’s meeting went well. He got the services I believe he needs.

The part that gets me, is hearing about where he struggles. It is not something I talk about here often. He does struggle, in so many areas. It is hard to listen to. I know it is coming, but it never makes it easier to hear. Of course I hear the good things too, but it is the struggles that stay in the front of my mind. I left and felt, for lack of a better word, Blah all day. I spent most of it in a sort of fog.

Then, he got home from school. He got off the bus and flashed his handsome little grin at me. “Hi mommy! You know, it is raining out!” He proceeded to walk to the car giggling, and trying to catch the raindrops on his tongue. I just watched him and smiled.

We got home from the bus stop. “Mommy, will you come watch Angry Birds Tunes with me?” Of course I did. And he laughed, his most contagious belly laugh. How could a person not feel better after hearing their child snort from laughing so much.

Yep…some things are more difficult for him, and they may always be. I don’t know what the future holds and I TRY not to think ahead too much. BUT, he works so hard. He has made such progress over the last few years. I have to remind myself of that on days like yesterday. There will always be hiccups, but he is healthy and happy. I really can’t ask for more than that.

As I was writing this, I saw my friend Jane post a picture of the fortune her daughter Janelle got in her fortune cookie. I loved it, and thought it was fitting here:

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We were lucky

Many of you know that I am not only any autism mom, I am also an allergy mom. My older son has life threatening food allergies.

Thanksgiving day 2007:
David was four years old. My friend and her family came over to spend the day. We had finished eating dinner. A while later David told me he was hungry. We had granola bars in the cabinet. We always had them. He loved them. I told him he could have one. He unwrapped it and took a bite. Within a minute or two he began to tell me he didn’t feel well. His tummy was hurting. He laid down on the couch. I walked into the kitchen to get him some ginger ale, and while I was in there I heard him start to cough. I ran back to him. His eye was almost swollen shut, he was coughing uncontrollably and starting to vomit now as well.

I HAD NO IDEA WHAT WAS WRONG WITH HIM.

It happened so fast. I racked my brain trying to figure what could have happened. Then it hit me…Could it have been the granola bar? I read the label. PEANUT BUTTER granola bar. He never had peanut butter before. Panicked, I called the pediatrician. Of course it was the on call service because it was Thanksgiving night. We gave him benadryl as we waited for doctor to call back. Now hives were popping out all over his little body. One dose of benadryl down, and it came right back up. I was trying to clean him up and gave him a second dose of benadryl when the doctor called back. I explained what happened, and he told me to get to an emergency room right now.

I drove him there….DROVE HIM. I wasn’t thinking. I just put him in the car, and drove as fast as I could.

When we got to the ER they shuffled us through so fast. They insterted a picc line in his arm just in case he had a “rebound reaction”. A what??? This was all new to me. We spent a few hours there while they monitored him. The ER doctor began to explain that WE WERE LUCKY. Hearing that made me break down. My adrenneline was pumping so much, that when the dust settled, I realized just how bad it really could have been.

WE WERE LUCKY. In the days that followed we saw his pediatrician and we went to the allergist. We learned he is HIGHLY allergic to peanuts and tree nuts, among other things.

I also found out, after his diagnosis, that I am allergic to tree nuts. I was 35 years old. My whole life, I never knew. I just suspected it and just stayed away from tree nuts. I never saw an allergist until that day. My parents never knew. Again the allergist used the word “lucky” to describe MY life experience as well.

We both left that visit armed with Epi-Pens. I left that visit hoping we would never need to use them. To this day, we haven’t. I am hypervigilant. I have to be.

To people that think food allergies are a joke, or are not that serious: Watch your child go through what mine did, after ONE BITE of a peanut butter granola bar.

WE WERE LUCKY.

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This is me and David. He is 10 now.

#FoodAllergyLivesMatter
#FARE
#LoveRemembers2015

For the love of coffee

The hubby and I love coffee. Yeah yeah…SHOCKER!

He drives to work every morning. He normally stops at Quick Chek, and picks one up on his way. Well, he found this new flavor that he raved about, Pecan Sticky Bun. He LOVED it. A few of his glorious mornings passed, until one day he came home aggravated.

“I can’t believe they got rid of MY FAVORITE FLAVOR.”

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He was defeated, sad even, over the loss of his new found favorite.

He decided to scour the internet…for days. Of course you can find ANYTHING on the internet, right? Nope. His beloved Pecan Sticky Bun coffee was nowhere to be found. He even tried other brands and flavors as an alternative, but none were satisfying.

Side note: My husband is not one to give up on something he wants, without a fight. He can be….stubborn.

In a last ditch effort he decided to email Quick Chek and see maybe if they would sell him some. Obsessed a bit? Maybe. The kind woman told him, no. She was sorry, but they had none that they could sell him. There were a few emails back and forth and then she finally sent him this email:

Hi Jason,

I’ve been speaking with our coffee roaster and they have a few bags of Pecan Sticky Bun Coffee on hand.

Can you please provide me with your full name and shipping address?  I’ll have them sent out to you directly.

Sincerely,

Mandy (left her last name out for privacy)
Senior Category Manager | QuickChek Corporation

No charge. She is just sending him the bags for free. He was lucky enough to find someone who would go above and beyond to help my poor, Pecan Sticky Bun coffee, crazed husband.

Mandy….he thanks you.

I, the one who has had to listen to his ranting, also thank you from the bottom of my heart.

After reading her name, this immediately popped into my head:

“Oh, Mandy. Well you came and you gave without taking.”
– Barry Manilow

****Update to the story***

Much to our surprise, UPS knocked on the door yesterday. My daughter told me they just dropped off some BOXES. I thought that was strange, since I hadn’t ordered anything, from anywhere. THIS is what I found:
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FOUR!! Count them…four boxes. The green is 100% Columbian Coffee, the gold is Decaf coffee (with filters, of course), a CASE of Splenda AND what the hubby so desperately needed, the RED. The red is his Pecan Sticky Bun coffee!!

Talk about going above and beyond for someone!

Thanks again Mandy, you are AWESOME!

A little something about me…I am an introvert. I can also be painfully shy. If I was in a group of 4000+ people, you would find me huddled in the corner somewhere..just kidding, sort of. I am a people watcher. I will talk to you once I am completley comfortable. That takes quite a while for me.

A year or so ago, I also became part of a Facebook autism support group. I did what I normally do, in real life, for a while. I watched what went on. After all, I didn’t really know these people. I interacted just a little bit here and there. Each day a bit more. They seemed to get it. So many times I would see a post and think.. Yes!! That is my life too.

As time has gone on, these people have become my friends. We laugh together…and a lot of the time, at each other. We cry together. We lean on each other, for support. We celebrate together. We check in on each other and we talk, almost daily.

I am grateful for you. Some days you are my lifeline. I am grateful for facebook, because if I met you all in some crowded room I probably wouldn’t have had the time to come out of my shell enough to ever talk to you.

I may never meet you. I may never hear your voices.

But know this: You are always with me. You are always in my thoughts. And most of all, you will always be my friends.

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Take care of you

So..today I took a spill.

For those of you who don’t know me, it is not uncommon for me to hurt myself. I am, after all, so damn graceful.

Anyway, we got a crazy snow squall this morning just as it was bus stop time. I was focused on Michael. He has a tendency to bolt from the car to the bus, regardless of the 1000+ prior times I have told him not to run. He started to run. I was so worried about him falling, that I forgot to take care of myself and I went down, in what seemed like painful slow motion.  It was a split second, I am sure. I hit the ground, and landed on my arm. A friend came over helped me up and we walked to the bus. Michael was already in his seat, hysterically crying because it took me a bit longer to get to my usual spot to wave goodbye to him. Once he saw me, I blew him an air kiss and he immediately calmed down. All was right in his world now. I was where I belonged, and I was doing what I was supposed to do..as I do every morning.

That little episode reminded me of this: We, as parents, caregivers and such, have to remember to take care of ourselves. I know for me, that I focus on the kids so much that I have a tendency to forget to take care of myself sometimes. They need us to be at our best. They NEED us to be there, just as he needed me in my spot waving.

I will be fine. Other than a slightly bruised ego, and what will be a sore body tomorrow. But, maybe next time I will remember to take care of me too.

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The views expressed in this blog are opinions. This blog is not intended to diagnose, treat, cure, cause, worsen, or delay any disease or mental health state. To contact me, e-mail aspieblogger@gmail.com

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