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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….

Abigail wrote a paper for school last week…

Written By: teamcharliebear - Aug• 20•13

Before I post her paper there are a few things I want to get off my chest.  There are no words for how I feel about my children. Words that can truly capture my emotions regarding those two simply haven’t been created yet, and I doubt they ever will be!  This morning, while drinking my first cup of coffee I happened upon something that really upset me. A hateful letter that’s gone viral overnight displaying  just how cruel some people can be toward a family living with ASD (autism spectrum disorder). It was the most vile, heartless thing I’ve ever seen. It displayed such a lack of humanity towards another human being that not only was I shocked, but  I was sobbing by the time I processed it all. I refuse to post it here…It has rented enough space in my head. I generally try not to cry in front of my kids. They of course know I’m capable of such emotions, but I try to let them see me positive as an example. This morning there was no hiding how upset I was when Abigail happened down the stairs, and I had to tell her what was wrong. This anonymous person exploited my fears of the worst possible case scenarios, and in just one paragraph they broke me.  Forget about the rest of the hateful venom they spewed. The worst part was what I knew to be my own fears for my son’s future seemingly slapped across my face first thing in the morning.  I was left staring down a barrel of a gun of doubt. What if …? What if  he can’t ever find a job because no one wants to hire him? What if no girl will ever love or want to marry him? What if..  I die and no one will take care of him? I was left looking at the very things that already keep me awake at night. Except, now I knew that the boogieman truly exist because someone somewhere actually put it in writing and had the audacity to say it. It was a heartbreaking reality, but here it was. I could either let it defeat me or I could use it as an opportunity. A chance to tell Abigail that yes, there will always be bullies. Yes, they will try and break you down and will say whatever they can to see that you do, in fact shatter.  I tried to reiterate the fact that we’re in charge of own happiness in life. Still I was visibly shaken and told her I may not always be here to protect Charlie from the negative ninnies of the world… That’s when she interrupted me…”But I WILL! I will make sure of it, Mama! I will make sure he knows he is loved and not less!” I just hugged her tight. It’s gonna be OK. One day,  if my attempts to find a vampire to marry so I can live forever do at long last fail… He will have her, and I am truly lucky. He teaches me that you can be happy no matter the circumstance. He is almost always smiling, and affectionate. She teaches me that sibling rivalry isn’t the only existence for brothers and sisters. Some of them do actually love one another, and protect each other at all cost. Thank you God for my sweet children. Maybe one day I can teach them a thing or two as well ;) For now, I’m content with their lessons to me. This paper she wrote for school last week is another fine example of how she wants to help others understand this “autism thing”. She says she answers the same question every day just about: “why can’t your brother talk?”  She tells her peers that he has autism, and what that means for him, for her, and for us. She will be 9 the last day of this month. I can’t believe how time flies, or that she really isn’t an adult already with the way she understands some things about the world at her tender age. I hope she will always exhibit the strength I saw today regarding such ignorant people. I’m so very proud of her, and of her brother who works so hard to learn everything. All the while keeping a smile on his sweet face.  I love every typo and misspelled word. It’s only proof she is still just 8, and most definitely my child! Ha! Bless her heart. I guess this is what they meant by “and a little child shall lead them”.  Well done Abigail. I love you!

 

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Between a Laugh & a Tear…

Written By: teamcharliebear - Aug• 04•13

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Not since my own childhood has a summer flown by so fast! Has it really been nine whole weeks? You’d think I’d be more excited about it ending. You’d think I would have been ready for the driving at least to come to an end? You’d think… But I’m just not. Somehow there’s something amiss this time. I’m left feeling a bit sad and melancholy about the end of another wonderful summer….kinda…sorta. Maybe that’s the problem. Was it “so wonderful”?

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This summer started out with such a bang! Charlie was off and running straight outta the gate on week one. Making friends and talking more, and then “IT” happened. By week two we started getting plagued with issues. First his tummy, then he lost his insurance, then my job, and then he was sick …AGAIN! It seemed to never end. Even still, I feel he made great progress this summer in spite of it all. I’m only concerned that we are back to him barely eating anything due to all the being sick. Reckon that’s why we have him in eating therapy. It’s why we started in the first place after all. The regression is just a disheartening thing to witness when you’ve been working so hard. With his insurance being on the fritz I don’t know how much longer we can keep up his therapy regimen. I’ve tried to look at this from different angles. Which therapies are the most important? Eating therapy is obviously vital because he barely eats and it is probably a lot of the reason he gets sick so easily. Although I love calling him an “emerging communicator” my son is still primarily nonverbal and can’t tell me what’s wrong, what hurts, or what’s going on with him. Speech is very important. We have made a few strides in this department, but Charlie at 7 years old still can’t dress himself, eat with utensils, & write his name without help (1st name only). He can barely brush his teeth, needs help bathing, isn’t 100% potty trained and I still freak out when he tries to cut a line with scissors! Yes, occupational therapy is necessary! That leaves ABA, or behavior therapy in english. If I had a nickel for every behavior oriented note that got sent home from school last year I could afford these therapies! Trust me when I say that behavior is an issue. I’ve often gone rounds in my own head about if I am doing my son a service or a disservice? When he was younger Charlie was always happy. In a room with stuffed animals, in a room with a television playing cartoons….he’d be quiet and content for hours. Often to the point of worrying me because I’d have to go find him, but there he’d be. In a mound of plush stuffed animals stimming (i know now) with a tail on one them. It was like he was happy just being placed in the world. Now he gets so frustrated, and even though logic tells me it’s good because that means he wants MORE it hurts to see him struggle. What’s worse is knowing that because of my own shortcomings as an adult and provider I may not be able to provide the necessary resources to help him get where he needs to be…and I feel guilty. I think that’s the real issue here. Guilt! I suppose it doesn’t help that I’m just getting over the plague myself. I caught it finally from my loving offspring by the end of last week. It’s no wonder really since I haven’t been sleeping. They’ve done a tag team the last two weeks on some crazy virus. First her, then him. So he missed the first two days of the last week of camp due to getting sick, and I missed work…which was bad enough. Then Friday what should have been his final day at camp and a huge celebration of a job well done…I was so sick I couldn’t take him and he didn’t even get to go. Camp came in like a lion and literally went out like a whipped kitten.. Sadness. I feel responsible for it too. That day was switch day on the custody calendar, so when the kids got to my place CBear stretched out on the couch beside where I was sitting. I swear he’s grown a foot this summer! Sounding a bit like a long lost relative of Barry White I apologized for making him miss his last day of camp and told him I hoped he wasn’t too mad at me…trying not to cry. I asked if I could have a hug and kiss. He obliged. I think we’re still cool. :) whew! That was a close one…

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The coolest part of the last week was that his sister got to go with him the two days he did go. I enjoyed having them both with me. I know he enjoyed her being there, and I think it deffinately offered her some perspective. Always a good thing. She’s always been good with her brother, but no two kids with autism are the same. I think it was good for her and she got to feed the horses one day so she was ecstatic! Win-win!

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It’s difficult to believe the summer is almost over, but when I look at all the changes that have happened since it began.. It’s hard to believe that much can change in just nine weeks! The kids go back to school next week. Fourth and second grades. My babies are growing up so fast! My life, once so predetermined, seems to have a whole new path full of meaning and purpose…and uncertainty. If it’s one thing I know it’s that both my Grandmothers were right and so was John Mellencamp. Sure, I’ll elaborate..why not! This is already gonna be the longest post in the history of all time! Granny Jones always said “ain’t no use in worryin’ cause ain’t nothing gonna be alright no way”. I reckon she had a point and the sarcastic side of me loved the pessimist in her. My Mumsie always believed everything would work out for the best. I admit, I lean to this side myself…I mean, it just about HAS to get better..ya think?! Kinda looks like I got a good mix of the two if ya ask me. Lastly, brother Mellencamp had a little song on an album way back when, named Scarecrow that always seems to come to mind in times like these…The name of the song itself however was “Between a laugh and a tear”. Now my daddy may not be the smartest person in the world, but one thing he taught me was to listen to the words of songs…for that I’m grateful. This one said…

When paradise is no longer fit for you to live in, and adolescent dreams are gone…Through the days you feel a little used up, Don’t know where your energy’s gone wrong.

That’s just your soul feelin’ a little too downhearted…Sometimes life is too ridiculous to live. Count your friends all on one finger, I know it sounds crazy, It’s just the way that we live….

Between a laugh, and a tear…smile in the mirror as you walk by. Between a laugh, and a tear, and that’s as good as it gets for us, but that ain’t no reason to stop tryin’.

When this cardboard town can no longer amuse you, You see through everything and nothing seems worthwhile. Hypocrite used to be such a big word to you, don’t seem to mean anything to you now.

Just try to live each and every precious moment…Don’t be discouraged by the future, forget your past. That’s old advice but it will be good to you, I know there’s a balance I see it when i swing past…..

Between a laugh, and a tear…smile in the mirror as you walk by. Between a laugh, and a tear, and that’s as good as it gets for us, but that ain’t no reason to stop tryin’.

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Nope….I reckon it’s not, Bro. Mellencamp …might as well keep on trying. It’s gotta get better from here after all, right?

Rock Star Week!!!

Written By: teamcharliebear - Jul• 19•13

Charlie has had a rock star week!  The videos below speak for themselves!


In this video you’ll see lots of stimming and although he knows the words he’s having a difficult time. This is life with autism. He has trouble processing it all at once. Words, outside noise, etc.


Label cards – right after camp so he was pretty tired but did well! Only got distracted a few times and here you’ll see some classic examples of stimming. Very proud of his progress :)


Charlie helps read “Kiss Kiss” – He does some “hiding” and stimming but overall I love the way he says some of the animal names in this book! So precious! A day in the life of autism…


My name is… He certainly knows his name and we are getting are introductions down!!! He knows his age too! YAY!!!

Camp AFT Week 6: Meltdowns, Shake-ups, & Roll Call

Written By: teamcharliebear - Jul• 16•13

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It only took us six weeks, but we did it!!!  A complete week at camp without a sick day or a holiday to hold us back. I hafta say, Bear’s been a trooper through it all. His schedule is nothing to scoff at. Most adults get tired just reading it!  However, the kid is hanging in there like “a hair in a biscuit” as my GranDaddy Bill Jones use to say, and I couldn’t be more proud of his efforts. They appear to be paying off as well.  He is pushing himself to find more words all the time. So much so that he has almost stopped using his communicator book all together. When we get it out for therapies so he can make choices of what he wants to work for on his token board often times he will space out, or get uninterested. We have to up the bar offering tangible objects in the room or something in his backpack. This could be due to the way they are running the camp. The counselors have laminated strips they carry in their back pockets. On one side they say “I want ____” and on the flip side  it has the words “YES      NO”. This way they can do things without pulling books for each child and work spur of the moment or on the fly with any situation, and still give opportunities for verbalizations.  For example, if Charlie is wanting a turn on the swing and we know this by him walking over to it….before he can sit down Dustin will get the strip handy and he might ask “Charlie, what do you want?” To prompt him to say “I want swing”.  Other times he might ask “do you want to swing, Charlie?” Giving a “yes” or “no” option.  This has evolved into our sessions as well and I gotta tell ya…he is doing FABULOUS with it! Truly I wish I had one of those strips and I believe all his teachers should use one! It was a genius idea on Dustin’s part in my opinion. The week wasn’t without its problems, mind you. We had our share of meltdowns…Charlie’s and mine! He was especially clingy for some unknown reason this week. While I don’t mind that I often wonder what spurs these emotions. I can’t read his mind and he can’t tell me. Sure, there are times that I have fairly solid theories as to what’s going on with him.  Days like Friday I’m as lost as an Easter egg on Christmas morning and it rips my heart out to see him in such a state. He woke up happy, got a shower and all was well when I went to do the same. However, when I came downstairs after mine he was hiding under the kitchen table. I attempted to put on his shoes, and he wasn’t having it! He started crying crocodile tears!! Seemingly for no reason at all, and there was just no consoling him.  Deep pressure, snuggling, pediasure…even dinosaur train on PBS didn’t work…until it did! I dunno why it didn’t one minute and did the next, but he flipped the switch from crying to shrieking with laughter faster than you can slap a tick!  It was like watching an episode of bipolar extremes!  We were finally able to get to camp…albeit an hour and a half late, but there none-the-less.

The week came with my own meltdowns as well.  I don’t fear much in life, just the unknown. Not knowing how I’m going to survive or provide for my children…? THAT WILL DO IT! When I learned the family business had decided to go a different direction..one that didn’t include me to be more specific, I got more than a little concerned.  How was I going to provide for my children? Afford the out of pocket therapies that I have been paying for alone more often than not all this time???  Etc, so on and so forth… The more I thought about it the worse it got, and to make matters worse I had business all mangled with personal. So there was nowhere to turn. Then, as luck would have it, I was talking to Rhonda at AFT about gathering bills to prove expenses on my course to try and get the kids their insurance back. This time hopefully a branch BOTH therapy places took, and I mentioned THIS website. Upon seeing my labor of love she realized my passion for spreading awareness and within two days offered me a job! I’m so grateful to have one I don’t know what to say. The fact that it’s  in the field it is..? Well, I think that goes without saying! I won’t be getting rich on money anytime soon, but you can’t put a price on this kind of happy! Wow! It may sound trite to some, but to answer a phone with a frantic mom on the other end who’s child as just been diagnosed….she doesn’t know which end is up, and I get to tell her it’s going to be ok and direct her towards one of the talented therapists there that can help open her world up to possibilities…? I was THAT mom once! NO ONE would talk to me anywhere else because we didn’t have insurance! I had money…then. But they didn’t care!!! No insurance, no service! CLICK! But not AFT! They saved my son, and now..I get to be a part of that. I’m thrilled. Not for the diagnoses, but for the hope we can provide. It’s the most incredible thing I’ve ever had the chance to be a part of (professionally speaking)and I’m so thankful to Rhonda, and Karen for letting me. Thank you Shana for setting up this site and getting my foot in the door…who knew?? Right! ;)

In closing, I’d like to announce the biggest accomplishment that Charlie had last week.  Remember the foam board I made with the velcro alphabet and his name at the top? Well, I taught him to say his full name when pointing at the words. You know what’s better than that though? He can say: “My name is Charlie Gregory” !!!!  He has to repeat it after me but he’s getting it.  Lock your daughters up y’all! My lil Don Juan is learning to introduce himself!!! Don’t say you weren’t warned….