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Football, Zebras, Infernos, and Inspirations. Just your average weekend…

Written By: teamcharliebear - Sep• 04•13

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Things have gotten intense over the last…? When were things not at some varied stage of “WTF!?” around here? That’s what I’d like to know. The last time that someone asked me how it was going and I said “Good, thanks” …and meant it, where was I? I wish someone had slapped me and told me to go and and get a tattoo or something because I was gonna wanna remember that! Don’t worry, I’m not gonna start whining about how hard life is. I’m pretty sure if you found this blog at all you might know that in some shape or form. I will say that last week was NOT the week you want your AC to be out on your car! One hour commute, sometimes twice that long in traffic. At least half that time in stand still, NO WIND, 100 Degree heat! Yeah… You start to question your faith in all kinds of things at that level of heat stroke. It’s been out for two weeks now, and I’m sure eventually I will get it fixed. For now, it keeps me from going anywhere I don’t absolutely have to go so gas is getting a little better and this week it’s only in the eighties temp wise. Today there was even a breeze. It’s looking up a little. We’ve done the usual dance of late that I’m beginning to refer to as “wash, rinse, repeat”. That’s where I call the doctors offices, department of human services, and the social security administration to see how all that’s going. Operation: screwed by the government is still going strong. We get to re apply for insurance..again, and his disability is going through yet another attempt. I bring these things up merely as a point of reference. This is something so many families like mine have to do but it’s a full time job to fight and appeal these people! Heaven forbid I try to earn some money by actually working! They want me down there talking…or rather, yelling at them everyday during working hours. It’s ridiculous! I will never make fun of someone on govt. aid….those people WORKED HARD to get that money! There is no such thing as free money in this world. They are hard working, professional stalkers! They’re getting paid to put in some serious time hounding just one person to even get a phone call returned…I promise! One of these days….it’s just bound to get better. It just has to…

Memo to God: My middle name is spelled J-O. Not J-O-B what’s with the trials and tribulations? I thought you were my homie G?

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As if melting in road rage wasn’t enough fun for the week, this weekend I got to host a sleepover for five preteen girls on a monster sugar high! I loved it however. Abigail turned 9 on Saturday and I’m still in shock! I can’t keep a houseplant alive for a month, but somehow she has survived against all odds :) It’s truly impressive. What’s even more impressive is the ability at the young body to not go to bed until 4, and get back up at 7:00…Wow! I got a whole hour of luxurious sleep between four and five when Charlie woke up. He was afraid I would get lonely I reckon… Sweet children. Mine are so thoughtful I haven’t been lonely in a bathroom for YEARS now! ;)

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Charlie did some pretty cute things at her party. One of my personal favorites was just watching him all kicked back watching football with William. They were pretty cute. When we sang Happy Birthday he chimed in and said “Happy Birthday” once. It was him repeating but it’s progress and it was sweet to hear him tell her. One time while she was upstairs with her friends doing makeovers he was missing her and remembering the cheer she taught him a week or so back. He kicked each leg and clapped his hands and said “firecracker firecracker” and I was amazed at him doing it without her prompting him. He usually mimics her! It was pretty cool. She ended up going to a friend’s house from the sleepover Sunday and she stayed with her that night. He was distraught! I know she has to have time on her own, but she is his best friend and he doesn’t like for them to be apart. ..at all! It actually took me a while to figure out what he wanted. On Sunday he ate the first cookie he’d eaten in weeks. I was thrilled! He them promptly at five more, Yay! After that he was saying “I want Zebra —?” But pointed to the kitchen. I took him in there and offered every food to no avail. Finally tried his communicator book and it was a picture of Abigail he picked. I said “oh! You miss sissy? You miss Abigail?” He said “yeah, abidale — ?” I explained she would be home in the morning and we built a castle with Legos…again :) He gets mad when I don’t follow the color pattern he has in mind. I build for structure stability. He is all about the color scheme. Haha! He’s something else…

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This morning was yet mother milestone for young Seek and Destroy. They rode their respective buses to school for the first times ever and I think I handled it..ok. So, maybe I forgot my wallet when I left this morning. All I was thinking about was the phone call I was going to get from his sweet teacher who promised to let me know he arrived safely. That is, until I got to the gas station and..well..I had no wallet. At least the kids weren’t late. Perhaps tomorrow even I can join those ranks as well. Abigail is already over the whole bus experience. She said I can go back to driving them tomorrow, one day of that was enough! Oh boy…it’s gonna be a long year.

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In other news, I’ve discovered there is a direct correlation to how bad things are deep down and how much racket I’m making to the contrary on the surface!  It’s an exercise in smoke and mirrors, and I’m GREAT AT IT. I can’t remember a time when things were this bad in areas of my life. In others, they’ve never been this good! Yet I have to admit that when I feel like things are out of my control and I can’t “fix” them (and lets face it..not everything can be controlled or fixed..it just can’t) that’s when I might be most productive! I might seem to some,  like the most organized person they’ve ever seen. Perhaps, I seem strong and like I have it together. If you’re laughing at those statements you are not alone. I laughed too, but ya know what?  Those things were said just this past week. I can look good on paper. Baring the train wreck that is my punctuation prowess. However, in real life, this full tilt boogie dance of life is something I don’t have mastered and I’d wage none of you do either. You just have a different set of problems. Likely ones money can’t fix…money would solve most of my problems and as my Dear old Daddy would say: If money will love your problem then it isn’t a real problem. Naturally it’s hard to feel that way when your flat busted..money seems like a pretty big issue, but in the grand scheme of it all…it isn’t. He’s right about that. Therefore, I wouldn’t trade my problems for theirs right now. Mine are probably a lot more simple when it comes down to it. Besides, I keep finding inspiration and motivation in the smoke and mirrors so at least they are working toward the greater good.

I recently read an article that caught my attention about the invisible victims of autism: the siblings. It lit a fire under me. Save Abigail! Something to fix! We might not be able to afford to put her in group therapy for this but by golly I’ll create a free group on my own! Sounds crazy so it might just work. Within a day we had a team assembled and the mayor of our little town waiting in the wings to let us use free venues to host the meetings. and (siblings w/autism group) or… SWAG Support was born. :)

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The idea is we will meet at least once a month. A counselor will mediate the discussion for our typical kids like Abigail for an hour while I host a play date portion for our special friends and their parents as well as have help from volunteers. It will be very structured with activities and after that hour the typical peers get to socialize with one another and make friends and play too for up to an hour. I will keep our special friends entertained for one more hour(total of two) or until everyone leaves if they leave before that. We have a great group of people and I’m really excited. So is miss Abigail! I even made a good friend or two out of the group. One in particular makes me think I might kinda know what it’s like to talk to a grown up Abigail just a tiny bit. I have the mom point of view and she grew up with two brothers on the spectrum. She is fascinating, tough, sweet at the same time and she works with special needs kids! I adore her…she inspires me. Oh, and when i mentioned SWAG at work…The owner of AFT loved the idea and even wants us to meet there on occasion. Awesome!
I met an awesome lady at work today too. She has a grown son who just graduated high school. She was looking for services for him but we only deal with adolescents. Still, this is why I love my job. She came in, we began talking and to hear their story gave me goosebumps! He spoke at his high school graduation in front of more people than I would’ve been comfortable with, and he was flawless! I saw the young mans picture too. He’s going to be quite a force to be reckoned with I’d say. Thank you, friend for sharing your story with me. You put wind in my sail when I truly needed it today. A little hope goes a long way on this road. I hope we stay in touch, I’m inspired by your journey.

In a way, I guess I do really have it together when I’m falling apart at the seams. I’m actually rich in a lot of ways and I know for sure how lucky I truly am not to have any “real” problems. Inspiration can come in a variety of forms and when you least expect it but its always welcome around here….

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2 Comments

  1. Bethany Y says:

    PJ, I hadn’t checked out what Charlie has been up to since summer camp ended. As it turns out, you all have been busy. I love, love, LOVE the SWAG idea. You are such a blessing to not only your own family, but to the autism community as well.

    Please tell Charlie I say hello and give him a hug for me. Maybe I will see you all at camp again next summer :-)

    • teamcharliebear says:

      Aww, thank you and YAY! I’m so glad you told me you stopped by here! We have missed you! You are such a sweetheart to us and all those kids. They are lucky to have you. …Charlie says hello ;)

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