Always #MathiasStrong.

“Mom?”

“Yeah?”

“Where did Mathias go?”

“Well, he went to heaven.”

“That’s right, he died. He had cancer.”

That was my conversation with B yesterday. Autism and grief works oddly sometimes.

Our community received devestating news recently that a boy, Mathias, had passed on. Mathias was diagnosed with osterosarcoma in July 2012 and has been featured in various social media forums. He battled lung surgeries, amputation, chemotherapy and radiation. Yet he always was upbeat and positive about his battle.

Once word spread, people came together for Mathias. There were card writing campaigns, fundraisers of all sorts, and other events. In our area, you may see someone wearing a Team Mathias shirt or driving with a magnet on the back. Mathias played soccer, hence the #12 on gear (and the tag line “kicking cancer”).

Kids

Much like Gabriella, Mathias spearheaded so many efforts. He was part of an effort to petition Virginia for a “childhood cancer awareness” license plate.  This past summer he celebrated his birthday by raising bone marrow donation awareness.

To try and explain how much Mathias meant, I took B to a candlelight walk yesterday. He toughed it out – like I said, grief is hard to process. Sometimes it’s matter of fact; othertimes, it was outright heartwrenching hearing him cry during a song. When it was darker, we were to light paper lanterns. Well, fire in close proximity really freaked him out, and honestly, I was too. In fact, we had to suspend it – between the wind and the dryness, it was definitely a fire hazard. Regardless it was beautiful.

Lantern

Rest in peace, Mathias.

Since my days at Penn State I’ve always been involved with ‘THON, which benefits children with cancer. This young man continues to serve as a reminder that cancer still rips families apart, but can bring communities together.

Please keep the Giordano family in your thoughts and prayers. And, as always, fuck cancer.

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The Twelve Days of Christmas (Autism Style)

As told by me – with a bit of truth and a whole lot of humor. :)

On the first day of Christmas autism gave to me…
A fixation with the Christmas tree.

On the second day of Christmas autism gave to me…
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the third day of Christmas autism gave to me…
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the fourth day of Christmas autism gave to me…
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the fifth day of Christmas autism gave to me…
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the sixth day of Christmas autism gave to me…
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the seventh day of Christmas autism gave to me…
Noise canceling headphones,
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the eighth day of Christmas autism gave to me…
Aggressive kicking moments,
Noise canceling headphones,
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the ninth day of Christmas autism gave to me…
Nine visual schedules,
Aggressive kicking moments,
Noise canceling headphones,
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the tenth day of Christmas autism gave to me…
Overwhelming family gatherings,
Nine visual schedules,
Aggressive kicking moments,
Noise canceling headphones,
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the eleventh day of Christmas autism gave to me…
Eleven lists for Santa,
Overwhelming family gatherings,
Nine visual schedules,
Aggressive kicking moments,
Noise canceling headphones,
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

On the twelve day of Christmas autism gave to me…
Everlasting love,
Eleven lists for Santa,
Crazy family gatherings,
Nine visual schedules,
Aggressive kicking moments,
Noise canceling headphones,
Six jumping outbursts,
Five social stories!
Changing daily routines,
Three hours of lines,
Meltdowns in the mall,
And a fixation with the Christmas tree.

By the way, did you know that the 2014 price tag for the “real” Twelve Days of Christmas is just over $116K? Yep. 

Happy Holidays and may your change to routine be bright!

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Thankful.

It’s been a while.

Honestly, I haven’t been able to bring myself back to the blog. I mean, life hasn’t stopped. In fact, it sped up. We’ve been very busy. That’s good, since that’s how it should be. I’m thankful for that.

On the other hand, I’m so tired from running here, there and everywhere. I got lazy. I lost all track of scheduling and posting. I just got tired of it all.

Anywho.

B finished his first season of flag football. Now that was an experience. Group activities are hard for him. Many of you can relate to that. Either he gets frustrated, or bored, or tired, or angry, or whatever emotion you can come up with. His attention span made it tricky to pay attention to the coach, to learn and run plays, to be patient along the sidelines. He had some lousy behavior at games and he wanted to quit. As much (possibly unnecessary) pain and frustration it caused us, we made him stick it out. Mind you, practices started in August with games AND practices through September and October.

Of course his jersey was 13.

We learned he was not the fastest and he didn’t catch well. However he could block. And he loved to punt and kick. Unfortunately it was flag football so blocking is not really a skill to cheer on. Also, you don’t punt or kick field goals in flag football. But he did a fine job playing center.

We still cheered him on. He made it. We made it, rather. He got a trophy and medal to add to his collection.
FF

Meanwhile, M started her own activity. She started gymnastics in September. It’s perfect for her – running, jumping, tumbling. She’s one of the youngest in the group class but she is one tough cookie. She loves wearing her “uniform” to class. She has fun, and I don’t have to go into the gym with her. Win-Win!
Gymnastics

We had a rough stretch at school in October with B. Once the “newness” of school died down, he started testing boundaries. He had some incidents that he spent some quality time in the principal’s office. He has gotten smart enough to use disturbing language to get attention, even in a negative way. There are times that all he will do is debate with me to get his way. There were some epic meltdowns that hurt me to the core. I held on tight to the roller coaster. I think we got over one hump but the stress of knowing more can come (especially with the holidays) makes me groan.

Halloween came and went. B was a Ninja Turtle and M was, of course, Elsa. They enjoyed themselves immensely grabbing as much candy as possible. We still have a large amount of candy in our house that I have to figure out what to do with!
Halloween

Mom is adjusting to life here. It’s a bit busier here than at the farm. She likes having her space (and a TV with her own cable box) so she can watch her shows. We got her tablet fixed so she can play her Candy Crush, and I set up WiFi so she can stream news from “back home”. Oh and e-mail – she’s back up with Gmail. She’s still not on Facebook though.

As for me – well, my thyroid has decided to go wonky. My energy levels have plummeted, but yet my sleep schedule is messed up. I’m tired all the time and I’m cold. Now I have a real endocrinologist who has prodded me and tweaked my medicine. Oh and take blood. I hate getting my blood drawn! After two visits, we are still not on even ground. Like everything else, it’s a process, a slow one at that.

Today is Thanksgiving and I know I have so much to be thankful for. However, it’s a bittersweet reminder that Dad is no longer here. I have now gone through one year of holidays without him. No phone call, no visit. Certainly no more coming in and out of the house, smelling of cigarette smoke. I imagine it will a difficult few weeks as now I’m heading into another anniversary.

So, there you have it. Kinda. Sorta. Not really. But we’re all here!

Posted in Family, Life, Ramblings, Siblings | Tagged , , , | 6 Comments

Dear Autism “Community”: Do You HEAR Yourselves?

OneLoCoMommy:

Love this post regarding Jerry Seinfeld’s recent conversation with Brian Williams.

Originally posted on StimCity:

seinfeldThese are REAL comments on Autism Daddy’s facebook page concerning Jerry Seinfeld’s recent disclosure that he might be on the autism spectrum:

Melissa P: “As the mother of a very high functioning Aspie, I was very offended by Jerry Seinfeld’s self diagnosis. I saw his stand up once and saw beneath the veneer of his comedy an arrogant, elitist prick. His “social awkwardness” comes from his elitist viewpoint atop his magic money empire which prevents him from connecting with an “average” person. It doesn’t make him an Aspie, it makes him an a-hole.”

Karen D: “…gee what I wouldn’t give to have my essentially non-verbal son have a hit tv show for over a decade, make millions, talk casually on Letterman and Leno, do stand up. It’s like night and day, cookies and carrots, hard and easy…yeah they have things in common but they are so far from…

View original 934 more words

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