Monday, October 27, 2008

Ramblings

Today I had to drop off some paperwork at Carson's Ped to be filled out for the state. We got some great news last week that after two and a half months of dealing with four social workers and more documentation than I have ever seen - Carson was awarded priority status by the state of Michigan for a Children's waiver. What this means is the state of Michigan will cover his OT, PT, Speech, Music Therapy, Art Therapy, and Respite care. This waiver is not based on income and is solely based on the child's needs/diagnosis. This is a huge blessing and one that we did not think we would even be considered for. Honestly, when the social worker was telling me about the program she told me that the wait could be over a year. The state only gives out so many and you have to wait until one opens up. We applied and I figured it would be a year or never when we finally heard anything.

In the mean time, I was moving forward - full force on another program. This other program is based on diagnosis and the parents income. Since Jay and I make more than the top qualifying income (really not that much at all) we had to do a full financial disclosure and appeal the process. This program wanted 1,200 a month to offer our child services that could greatly improve his life. After two and a half years of out of pocket, we simply could not afford the 1,200 a month. I was in the process of another appeal when I got the call for the waiver last week.

So, long story short...I had more paper work to drop off to have filled out. I made an appointment with the ped. office manager as, I did not want any errors to be made to ruin our chances of this waiver. While there she asked me if I would mind talking to one of their nurses who's grandson was just diagnosed.

Wow. It was like reliving the past two plus years. They just found out. Her daughter can't even say the word - autism. I know how that feels. They are deal with insurance, case workers, IEP programs, etc. It is so overwhelming. As a grandmother she is worried about her grandchild but also her daughter.

Let's just say my 10 min appointment turned into an hour. I can't tell you how much I hate that this world of autism is getting smaller and smaller. As the epidemic grows, I am meeting more and more people affected by this. I hate that!! Three years ago, it was the last thing on my mind. Now I know other moms, dads, celebrities and am even starting to feel more like an experienced autism mom.

It hit me like a ton of bricks that this person was asking me advice. I still feel like there is so much for me to learn. Jay and I just do what we think is best for OUR kid. What works for one might not work for another. That is what is so hard about this disorder.

The greatest blessings are seeing it all pay off. I am seeing my "true" son more and more. I am seeing him get a sense of humor and learn how to control his emotions. I see him trying to interact with other kids more and more. I see him having more joy and awareness of his surroundings. For these things, there is nothing I would not do.

So, I fill this grandma in on all that we have tried and the hoops we have jumped through. I realized that by the time I left, I was really pumped up. I called Jay before I got out of the drive and was telling him about the conversation. It is strange how we don't even know her grandson but feel pain for he and his family. This world of Autism is becoming too common. With each person I met affected by this, I am comforted to not feel so alone but at the same time, I am pissed that any of us have to deal with it in the first place.

Jay and I always count our blessings - we know it could be so much worse. I follow other blogs of families going through things I never want to think about. I have talked to other parents at therapy centers and heard horror stories, I have seen young children alive but in a shell of a body caused by autism. No connection, no emotion, no communication.....nothing.

What makes this world of autism so painful is that - you see the disconnect in your child's face. You see the fear in them that you cannot take away. At times, you even see a glimpse of their "real self". The person on the inside that is not able to get out. To me, that is what hurts the most. Knowing that he is in there - somewhere - trying to get out - trying to communicate- and just not finding the words or way. That is my job. I will find it for him. My voice will be his until he can do it all on his own. I know he will someday! I have 100% confidence that my Carson will live a happy and productive life. I will never give up providing every opportunity for him to do just that.

For all the other moms and dads - keep the faith. We all have a burden to carry. Ours might be this world of autism, for someone else it is somthing else. I don't have pity parties feeling as though we are unique. We are not. This is just our battle. But anyone with a child will tell you - there is NOTHING you would not do to help them. Everyday - that is all Jay and I are trying to do!

Saturday, October 25, 2008

Future Dancers!

Here's some more pics from a couple of weekends ago. This is at my cousin Paul's graduation party! They had a DJ and the boys loved it. Griffin wouldn't stop dancing. I guess that he did get some of my genes after all. He had one staple move that he did all night.





Auntie Kristie and Auntie Carol made a limbo pole for the kids....








Carson danced with Mommy....




Little Fin shook it up with Granny....




Two videos of their fancy dance moves.

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We had so much fun watching them dance. Hope you enjoy!

Carson's First Day of School

Hi Everyone!

I was just going through pictures and realized that we forgot to blog about Carson's first day of school. He looks like such a big boy! This is his second year in preschool.


Mommy made him breakfast in bed (pancakes - his favorite, gluten free, of course!)





Waiting for the bus....




Sporting his Buzz Lightyear backpack....

He's not confined to the front seat this year!








He's doing much better at school these last couple of weeks! One whole week of yellow faces, which is great for Carson!


Tuesday, October 21, 2008

Pure Ignorance!

I pulled this from the internet on an Autism blog by Lisa Jo Rudy. I'm not sure if some of you have already heard these ridiculous comments made by Denis Leary or not. It's been all over the internet and on the entertainment TV circuit. It's amazing that in this time, someone can still be so ignorant. He's right up there with DJ Michael Savage.

A few months ago, shock jock radio host Michael Savage received an extraordinary amount of publicity by calling out autism dads:

"I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.' "True, Savage lost some advertisers, but as the credit card ads say - "ads? $5,000. publicity all over the net and on primetime TV? priceless!"

Now, Denis Leary is tapping the same keg - and while I had hoped to avoid blogging on the subject, I was surprised this morning by seeing mention of Leary's ridiculous rants front and center on - AOL! AOL is nothing if not mainstream, so it seems that Mr. Leary has already succeeded in making a nickel off the backs of frustrated autism parents. Here's what he has to say (through the eyes of the Huffington Post):

In his new book, "Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid," the joke-slinging "Rescue Me" star writes about the brain disorder: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."

Autism Speaks has already run a response, which seems to me to be measured and appropriate:

We are deeply disappointed that television personality Denis Leary would misuse his celebrity, compromise his reputation, and exploit the real challenges of individuals with autism in making his recent extremely disrespectful and hurtful comments. His words reflect a complete ignorance of and lack of sensitivity to the true plight of families facing autism. Autism is not a joke. It is very real, especially to the families and caregivers whose lives are forever changed when their loved one receives an autism diagnosis. Autism is recognized globally as an urgent healthcare crisis. Unfortunately, in a country built on the tenets of freedom of speech, sometimes people with access to the media are able to spread harmful mistruths. ...Of course, this measured response isn't what Leary's looking for. By directly insulting US, the autism moms and dads, and suggesting that our kids are, in fact, lazy and stupid, he's appealing to our lowest instincts. What he wants is a good, solid, knock down drag out fight. Preferably in front of plenty of TV cameras, face to face with Jenny McCarthy and Jim Carrey - so the story will be presented front and center on every TV station in America.
What worries me is this: Denis Leary may get precisely what he wants.


Just wanted to share this story to let all of you know how ignorant people can be. It's amazing!

Sunday, October 19, 2008

2nd Annual Blue Heron Lane Halloween Bash!

Last Saturday, our friends Margie and Marty invited us to their street's Halloween Party. They started this last year and we went and had a great time. It proved to be a great time again this year. We only got to stay for a couple of hours because we had another party that night but it was fun while it lasted.


Griffin didn't love his mouse head. It was a little hot last weekend so hopefully, he'll like it better on Halloween!




He loved rolling the pumpkins all over.....





The hostess Margie with new baby Drew the bumblebee


A family shot




Little Logan (our friends Becky and Jeff's little guy!)



Carson Buzz Lightyear unmasked (he was not too happy with the heat in his costume either!) I think that he inherited my sweating problem.



Blake as Flash!




Little Brooke the cat.....




Super Hero cousins!





Fin and Brooke hamming it up!


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A big thanks to Margie and Marty for having us! Can't wait for next year!

Saturday, October 18, 2008

1st Annual Pumpkin Carving Party at Granny and Pa's!

Hi Everyone! As I said in earlier last week, we had a very busy and very fun weekend with everyone! It started out last Friday with a pumpkin carving party at Granny and Pa's. Emily, the boys and I, Nonna, Papa Tom, Adrian, Luca, Adrian's friend Zack, Uncle Brian, Aunt Kristie, Blake, Brooke, Brian's parents, Uncle John , Aunt Denise and Gianna all joined in on the fun. Besides the mosquitoes in the pumpkin patch, it was a great night. Pa grew a pumpkin patch in his garden this year for the kids to pick their pumpkins. He ended up with about 40 pumpkins. We had a great time painting and carving!


Carson was into the painting....


Nonna helped Luca with some carving...





Blake did a little of both.....




Griffin took Blake's four wheeler for a spin.



Little Fin loves Papa Tom





Pa and the kids after picking the pumpkins...




Griffin wasn't quite sure about picking the pumpkins.



Luca playing with his balloon.






Carson, Granny and I taking a break...






Aunt Kristie, Blake and Brooke




Adrian liked carving.....


Carson preferred to ride in the cab with Pa during the picking part....





Mommy must have taken all the pictures that night because she wasn't in any. We'll make sure to get her in the next post. Hopefully, this will become an annual event. It was a great time. A big thanks to Granny and Pa for the delicous dinner and the fun night.


Monday, October 13, 2008

The EEG came back normal!

Thank God! Griffin's EEG came back normal so we're not sure exactly what happened but it wasn't a seizure. I called on Friday for the results. The girl on the phone told me that the results were sent to our pediatrician but that they were normal. Emily had Griffin at the pediatrician today for his 18 month well baby and the EEG results were not yet in his file but as far as we know, everything is okay.

He is in the 25th percentile for height and head circumference and 10-15th percentile for his weight....little peanut! I don't know how. He eats everything he can find. He's a little piggy! That's all to report from the well baby visit....NO VACCINES of course....and Emily said that nurse practitioner didn't even give her a hard time. She said that she understood......wow, are people waking up?

We had a busy weekend with lots of fun things to do so expect a few more blogs this week with lots of pictures but I'm too sleepy right now.

Sunday, October 12, 2008

Jewett Family Cider Mill Trip

We had a perfect day for our annual Jewett Cider Mill Trip! Lots of food, donuts, and cider were eaten by all (expect for poor Carson and Luca.) We distracted them as much as possible during the donut portion since they aren't gluten/casein free. We made a great memories like usual. Everyone had a great time!



Uncle Ron, Aunt Amiee and the boys



Me and my beautiful wife....



Farmer Tom and his wife!




Papa Tom had too many donuts.....



The whole family!




The boys (of course not looking...)




Little Fin and his godfather Uncle Tommy




Carson and his godmother Aunt Amiee





Papa and Adrian




Sisters!





Me and my boys!



Can't wait to do it again next year! It was a blast!

Fun Family Fridays!

The last couple of Fridays, Em and I took the boys to Dr. Mark's for our chiropractic adjustments and then headed over to the park in Shelby. They have great playscapes and a beautiful lake full of fish and ducks to feed. I'm not big on the whole duck part of it. They're so used to getting fed by people that they come super close and practically peck at your feet. Thankfully, Carson scares them away a lot. Here are some pics from our two fun Friday nights!













































Thanks for reading! We had a very busy weekend so lots of pics to come!