Tuesday, September 30, 2008

Another Curve Ball

Just when things seem to be going smoothly.....

We had a decent week last week. Jenny McCarthy's new book came out. We bought it and started reading it as well as watching her on Oprah. We're a little obsessed with her and her fight to spread awareness. Her story is so inspiring and her son is so much better. It sends a message of hope to those of us parents going through this ordeal. We're trying everything that she did. Things are looking pretty good.

We had a great weekend. Friday, we went to see Dr. Mark (our chiropractor) for our adjustments and then we took the boys to the park. We played on the playscapes and fed the fish and ducks. The boys loved it. I did too except for the ducks. They're crazy...they get so close to you to get the food. As many of you know, I'm very afraid of birds, ducks, geese, basically anything that flies or has wings (and bites or pecks you.) The funniest part of the evening was the fact that we gave Carson several coins to buy food to feed the ducks. He was so excited when we got there that he decided to skip the whole buying the food part and just try to feed the ducks and fish the coins. Quarters were flying in the lake...it was great.

Saturday, we chilled out for a while and then were invited over to our neighbor's house for a skeleton hunt. They are very into Halloween and it was great for the kids. Carson was a little timid and not too interested in the other kids but he did behave well and wasn't too over-stimulated which was nice. From there, Em and I were going to meet our friends Eric and Lisa and Angie, Toby and Tony up at the cool beer tent up where I grew up. We went to Granny and Pa's first to hang out and try to get the boys ready for bed before we left. When we were leaving, Carson said "Can I go with you?" Emily said "No, we're going to an adult party." He said "Can I go to an adult party?" Emily said "No." He said "Okay, bye mommy, bye daddy...having fun drinking!" It was hilarious...white trash, yes...but hilarious. Speaking of white trash...let's just say we saw our fair share throughout the evening.

Sunday, we went to the Cider Mill with Kristie, Brian and the kids, Matt and Julie and their kids and Kirk and Kristen and their little guy. It was fun with all the little ones. All four of our little ones are nearly the same age. Carson had so much fun in the corn mazes, haunted house, petting zoo, etc. He was so well behaved. Another perfect day....up until the end when we were walking along the side of the Cider Mill and Carson decided to run up and turn the water spicket on by the drinking fountain. Some water splashed on a guy that was getting a drink.....I was throwing away garbage so I missed most of the altercation but this is how it panned out:

Skanky looking guy to Emily - "You better watch your kid"
Emily responds - "I'm sorry. He doesn't understand that we're not at home and that he cannot turn on the spicket here."
Skanky guy says "Well my kids wouldn't have done that!"
Emily responds (not so nicely this time and rather loudly) "Well your kids probably don't have Autism and thank God for that!"

There went the damper on the day because Emily was quite upset after that and all the way home. I assured her that the skanky guy wasn't worth ruining our day over but as Emily pointed out, which is also something that Jenny talked about this week is that since there is nothing visually wrong with Carson, people don't understand his behavior and may just think he's bad. It's very annoying!

Overall, it was a great weekend! Last night, a co-worker of mine came over with some friends to discuss essential oils. She recently started selling them and has many success stories of people being cured of many different ailments due to the use of these oils (some specifically to do with Autism and ADHD.) It was a great meeting and we ordered several products. We're very excited to try them on Carson.

So a few good days....too good to be true?? Of course! This morning Griffin had a seizure (so we think!) Apparently, his head slumped over, eyes rolled, and he was unresponsive for about 20 seconds. It was right after Em left for work so Nonna and Papa Tom were with him. He snapped out of it. Em came home to take him to the hospital. The pediatrician wanted him brought in to the office first. He thinks it may have been what is called an Absence seizure. Really God? Are you trying to kill us? Thankfully, we are able to get into the neurologist tomorrow morning where Fin will get an EEG to help explain exactly what happened. Please pray for the best. I truly do not know what I will do if something is wrong with my little angel. He was normal the rest of the day and tonight so hopefully it was nothing but it's very hard to relax not knowing what's wrong or if it will happen again.

Not quite sure how much more I can take......

Thanks for caring!

Saturday, September 27, 2008

Every Day

Jay and I went to a wedding last weekend and on the very long drive there we were listing to the radio. Rascal Flatts is one of our most favorite bands. They were here at the Palace on tour so the local country radio was playing all of their new music. I heard this song and it brought tears to my eyes. It fits perfectly with how I feel about Jay. We have tons of good times and our life is wonderful but there are weeks and months that seem longer than the others. Phone calls, doc appointments, social workers, red faces at school....etc. I am so grateful that I have him on this journey of life.

"Every Day"

You could've bowed out gracefully
But you didn't
You knew enough to know
To leave well enough alone
But you wouldn't
I drive myself crazy
Tryin' to stay out of my own way
The messes that I make
But my secrets are so safe
The only one who gets me
Yeah, you get me
It's amazing to me

How every day
Every day, every day
You save my life

I come around all broken down and Crowded out
And you're comfort
Sometimes the place I go
Is so deep and dark and desperate
I don't know, I don't know

[Repeat Chorus]

Sometimes I swear, I don't know if I'm comin' or goin'
But you always say something
Without even knowin'
That I'm hangin' on to your words
With all of my might and it's alright
Yeah, I'm alright for one more night

Every day
Every day, every day,
Every day, every day

You save me, you save me

Every day you save my life


Thank you Jay for your never ending love, support, kindness and spirit. I could not do any of this without you. Thank you for being a Warrior Daddy!

I love you - Em

Friday, September 19, 2008

Welcome to Beirut - my week

Some of you really enjoyed my post called - Welcome to Holland. Below is another "Welcome" letter but from a different perspective. Unfortunatly, this one is more along the lines of how my week went. Big things are happening here but frankly I am too tired to even talk about them. No worries, Carson is good. I have just been dealing with insurance, the government and case workers all week. Fun stuff!


"Welcome to Beirut" by Susan F. Rzucindlo. I don't mean any disrespect to those who like the "Welcome to Holland" version, but in my house, most days are more like Beirut than Holland. I've edited it slightly for grammar and spelling.

WELCOME TO BEIRUT by Susan F. Rzucidlo

"I am often asked to describe the experience of raising a child with autis -- to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different from the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad.

One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "Your child has autism.

"There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping, like "Life-long diagnosis" and "Neurologically impaired." Bullets whiz by: "Refrigerator mother" "A good smack is all HE needs to straighten up." Your adrenaline races as the clock ticks away your child's chances for "recovery."

You sure as heck didn't sign up for this and want out NOW! God has overestimated your abilities. Unfortunately, there is no one to send your resignation to. You've done everything right in your life...well you tried...well, you weren't caught too often.

Hey! You've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger, more complex one (school).

Never to be out done, there is always the medical intervention maze. That one is almost never completed.There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some of the greatest folks in the world are doing the same maze you are, maybe on another level but a special ed maze just the same.

Tapping into those folks is a great lifeline to help you get through the day. This really sucks but hey, there are still good times to be had.

WARNING! You do develop an odd sense of humor.

Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child, and you cry. Your other children are embarrassed to be around your disabled child, and you sigh. Your insurance company refuses to provide therapies for "chronic, lifelong conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.

You're exhausted because your child doesn't sleep.

And yet, hope springs eternal. Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls; they'll understand -- they are living through similar times. For those people you will be forever grateful.

Don't get me wrong; this is war and it's awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share an odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again -- but hey, what fun is normal?


I am now going to log off and enjoy some snuggling time with my love. He got a yellow face today, we had a good day, we have a great weekend planned and I am going to try to forget all the responsibilities and just enjoy my time with him.

There is always next week!

Love you all - Em

Tuesday, September 16, 2008

Fun at the beach!

Our Labor Day Weekend fun ended with a trip up to the beach in Lexington. It was a great day. The beach was very nice. Carson loved climbing on the rocks and going into the "caves." Granny, Pa, Aunt Kristie, Blake, Brooke, Uncle Ron, Aunt Amiee, Adrian, Luca, Uncle Tommy and Aunt Niki all came with us. It was really hot and a great day to be at the beach.

Griffin loved the sand....

Carson havin' fun

Adrian and Blake were on a sucker break

Uncle Ron and Luca

Aunt Amiee and Griffin....

The kids had a great day!

Pa, Brooke and Carson

Granny, Pa and Carson

Everyone taking in some rays....

Another shot (wow Ron looks built...look at those tight abs...)

Looks like summer is over for this year. Hopefully, we'll get some nice fall weather like last year. I'm already dreading the long, dark winter. Thanks for reading!

Saturday, September 13, 2008

A Day at the Walker Resort

Hi Everyone! We finally are catching up with our Labor Day Weekend posts. This one is from Saturday. We spent the day at Aunt Carol and Uncle Roger's pool. It actually was a VERY good day. Carson was very content and on his best behavior. He loves the pool so we swam a lot. As you know the weekend weather was perfect so we had a busy schedule but all fun stuff. Saturday went the smoothest. Sunday, not so much. We planned on picnicking with Em's entire family at Stony but the bees were horrible so once everyone was unpacked and ready to picnic, we moved the party to Nonna and Papa Tom's house. Carson tends to not do too well with big groups inside so he and I hung out in the bedroom and watched Buzz Lightyear for a while but it was way too nice out to be doing that and since we weren't really at the party anyway, he and I cut it short and I took him swimming again at Aunt Carol's (after he napped the second we pulled out of Nonna's driveway.) That was really the only rough spot of the weekend though. Monday we went to the beach...those pictures will be in the next post.

Granny and her babies.....

Mommy and her twin (and her twins...thanks for sharing!)

Daddy and his best friend sharing a kiss

A peaceful moment at play (Carson, Fin and Brooke)

My beautiful boy (notice how looks into the camera now...he's coming along!)

Our future sports star showing his moves...

A refreshing swim with my buddy...

The rest of the family enjoying the day!
Aunt Carol and Andrea
Lori and her new grandbaby Emma

Heather and Justin (Emma's mommy and daddy)

Pa, Uncle Roger and his brother Don (Emma's grandpa)

Uncle Brian and his cute kids Blake and Brooke (looking the like Aunt Jemima)

We had a blast. It doesn't look like we'll able to do this again until June since the weather took a turn for the worse. It was fun while it lasted!

Monday, September 8, 2008

Holland is Beautiful

I noticed last week that there is a poster up at the therapy center Carson attends. I enjoyed reading it and hope you do too. I have attached it below. Enjoy!

Story by - Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, September 4, 2008

Something is happening...

I can't believe the things that I am seeing happen with Carson this week. It's amazing! This intense therapy seems to really be working. I'm so happy! Today, he and I had a full blown conversation. I went to pick him up from school to run him to therapy on my lunch (poor guy...3 hours of school and then 3 hours of therapy) and he started crying because he wanted to get on the bus and I was there to pick him up. The bus pulled away and he said "Oh no, I missed my bus, how am I going to get home now" as he was crying in my arms. A 14 word sentence! I assured him that everything was okay and that I was taking him with me. He said "Daddy, wanna go home and have a picnic and watch Little Bear?" I said I would love to but we have to go to Buzz Lightyear Space Camp (that's what we call therapy since he wears the thera-suit there.) He told me that he didn't want to go to Buzz Lightyear Camp. I asked him if he wanted to go to McDonalds. He said yes and that he wanted french fries and an orange drink. He walked by me, stood in line patiently to order and he helped me get our drinks. There was a play area at this McDonalds. I told him that we had to eat first. He ran onto the equipment, went down the slide once and came and ate with me until we were both done. We were in a hurry so I could only let him go on the play equipment for a couple of minutes. When we went to leave, I held his hand and.....no fit! Another miracle! He was very tired and did not want to go to therapy but we had to. Once we passed our exit on the expressway, he knew we weren't going home and started screaming and crying that he did not want to go to Buzz Lightyear Camp. It was heartbreaking because I would have loved nothing more than to be able to take him home and let him play like most four year olds do but I had to focus on how much he is improving and try to console him. The drop off did not go well but when I picked him up, they said that he transitioned well and had a good day. As soon as I picked him up, he asked if he could play the computer. Once we got home, that is what he did....he probably spent about two hours tonight playing games on the computer....ARE YOU KIDDING ME? He was controlling the mouse, using two hands on multiple buttons, following the directions, switching games by himself, running the computer like nobody's business. I sat there watching him in utter amazement. I am so grateful and so proud of him. Just watching his face while he played...he would yell "I did it...daddy lap (slap) me five...I did it all by myself." I was beaming with joy.

Tuesday on the way home, we called Granny. Before we called, I asked him what he did at Buzz Lightyear Camp...HE REPLIED "I played chasing, I played jumping, I played an elephant game and then I'm all done." A breakthrough! He talked back and forth with Granny....told her he went to Buzz Lightyear Camp, etc. After that, he talked to his cousin Blake (also 4.) He talked...paused, let Blake answer....back and forth. He said "Hello Blake...pause.....I feel happy now, I'm not bad anymore....pause....I went to Buzz Lightyear Camp.......pause......I love you Blake...goodbye." When Blake hung up, he told Granny "he said he's all better now." PRICELESS! I cannot explain the pure joy that I am feeling right now.

On another note, Griffin, our other son...you may have heard of him truly is the sweetest, kindest, and most joyful child I've ever seen. He makes our life so happy. He's saying two words together now and is very vocal. He's obsessed with sports and he's so good. He has an amazing slapshot for hockey...he slaps a ball around with his hockey stick non-stop. He's also got a great soccer kick. He kicks the ball all over and yells "score!" His newest trick is that he throws a ball up and hits it with his baseball bat and I'm not joking. Papa Tom even videotaped it on his phone and texted it to me today. He's only 17 months old. I've never seen anything like it. It's hilarious. He does it constantly...one sport to the other...I think that we have a future star athlete on our hands....me and Emily? Yes, really! You would have never guessed it! We don't even watch sports on TV (besides the Olympics!) He amazes me everyday. He is pure joy! I know he's mine but he is seriously one of the most beautiful children I have ever seen (compliments of Mommy!)

I got to spend the day with him on Tuesday (just he and I.) I took him to the mall (he was so good!) Then, I took him to the outdoor mall to play on the playscapes. We met a little boy there. He was very intrigued by Griffin and wanted to play with him. He was about three and a half I would say. His name was also Griffin and he couldn't understand how they had the same name. He said to me...he's a boy....I said yes, he's a boy....he said "does he have a penis?" I had to laugh and I assured him that Griffin had a penis. Then he told me that his feet were dirty but his butt was clean. He was so funny! Had to share that one!