best.day.EVER.

You know how Tristan is in absolute LOVE with Yo Gabba Gabba? His ultimate dream came true on Saturday when we took him to the Kids Fair to meet D.J. Lance Rock and Brobee. It was fabulous. I tell you, the most amazing thing to see your child in complete and utter awe of something....he was in heaven. The best part, it was THE D.J. Lance...the REAL one from the show. He rocked...majorly. There was a moment, when they were playing the "Family" song, he comes down from the stage, and Shannon runs Tristan up to the front to get a closer view...Shannon got teary eyed, it was the first time that he had a moment with Tristan, doing something that he REALLY enjoyed..they experienced it together, and it was really heartwarming to watch.

After the concert, which, by the way...was AWESOME, he got to actually meet with and take pictures with D.J. Lance and Brobee. He was so cool, he was soft and gentle with Tristan, trying not to scare him, Trinity told him that he had Autism, and he didn't bat an eye, he gave him a high five, wrapped his arms around him and Shannon, and had a picture together. It was a great family bonding experience, and it set the tone for the entire day.

I was so happy that we could do something just for him that he really loved. Something that tapped into his world, and for a moment, we were let in, to enjoy, to share, and to be a "normal" family....it was the best.day.ever.

Pee Pee on the Potty!!! YAY :)

We have been working with Tristan to go on his little potty before bath time for about a month now...he has been going about 50% of the time which is awesome. But, I have some fun and exciting new news to report! He has woke up dry for a solid week now, and immediately goes pee when we place him on the potty. He is also going after nap and before bath!!!! I am so happy for him that he is grasping this concept. Once we get his gut healed we can begin the process of working on #2.
He does his best reading there....
And thinking....

Even sneeks in a little time for kisses with Bear Bear.

Yay Tristan, we are SOOO proud of you buddy!

Me and You....

...and You and Me....T n t, will always be! The best of friends, they really are, and I am so greatful of how she loves him, protects him, and is proud of him. I love how he kisses her goodnight, every night and before nap. I love that they are so close. As you can see from the picture, he is almost the same height as his big sis...I mean, how much more can he grow!!!

It's all about perspective

Today is a good day. I feel a renewed sense of strength to continue on this path to recovery for Tristan. You know when you have those "A HA" moments? I had one today. And it led me to this post. It's all about perspective.

There have been days that I truly feel robbed of a "normal" son, days that I feel "Why us??? Why do we have this???" but then I remember, we were given this for a reason, and we are not given more than we can handle. This diagnosis has taught me that. I also know that Tristan is still my little boy, despite his autism. He is the same little boy that I gave birth to...the same little boy that loves us all unconditionally. I adore him, and want only the best for him and us.....and that means continuing to fight for him and fight for his recovery.

We have a rap sheet list full of tests that we have to get done for him in the coming weeks / months. He has to have a Thyroid Test (which are actually a series of 3 blood tests), CBC, Celiac Panel, RAST Test and another that I can't think of without looking at the order...I feel sad for little t. There are days that I feel like he is the one that is being robbed...his childhood thus far has consisted of doctors visits, specialists visits, weekly therapies and all different people coming in and out of his life..to test him, to evaluate him, to find out what he is and is not capable of. What about just being a kid??? What about Saturday morning cartoons?

I feel guilty. There are days that I feel guilty for taking him to therapy and all these doctors visits. It's exhausting, for all of us. BUT, then I jump back out of my pity party hole and realize the lengths that he has come since having said therapies. I realize that he is growing and learning, and he is happy. PERIOD. Despite all of this crap that he has to deal with day in and day out, the kid is one of the happiest that I have met.

He loves therapy...LOVES it. He enjoys meeting all these "different" people coming in and out of his life...he gets to meet other kiddos that are similiar to him. So, basically it is all about perspective. I have to change my perspective. I think I have had a sunny outlook on this most of the time, and I am proud to say that I have never felt embarassed or ashamed of him. I am so proud to be his mama, despite the outward differences that some may see. I look how he looks at me, and our eyes connect and in that moment I know that he understands me...I talk to him like I do Trinity, and though no words are spoken, his eyes speak volumes. I hope that others will get to know him. I hope that people can be patient and wait for his words, because, they are coming...I can feel it.

I Dance

Tristan LOVES music...ADORES it. We think that it may be his genius, he is like a metrinome when music comes on, he sways to the beat and listens carefully for it to change. He has rythym baby. Well, a few days ago he was dancing and I was sitting on the floor folding clothes. He kept saying "Ah Da" which I took for "All Done"...he would dance and look at me and say again "Ah Da" I would say, "you can be done sweety..." and go back to folding and watching him sway to the music...he stopped dancing, walked up to me and looked me right in the eye and said "Ah Da" and then danced again as if to show me....then I realized it, he was saying "I DANCE"....Of course I cried...are you crazy??

I luh doo baba

I will FOREVER embed this in my head, as it is the FIRST sentence that my son has attempted, TWICE. I was with my mom after Tristan's therapy on Friday, he had an ok session, she said that he was quieter than usual..which is what we have been noticing too. We went to Fresh and Easy to pick up a few things for Dakota's Dog Party and I was letting him run down the aisle. I love how excited he gets when you chase him, he squeals and tries to run faster, in his Frankenstienesque way, all stiff legged and bogartish...but he tries. Well, I picked him up and was running really fast with him, bopping up and down and kissing him. He was laughing, then grabbed both sides of my face and plants a messy kiss on my face. If anyone has recieved a Tristan kiss it is a unique experience for sure, open mouth, no puckering, usually soft and slow motion. Well, this one was over and over..then, he says it..."I luh doo baba"....WHAT??? Did he? I mean, was that? Wait a minute....I look at my mom and she has eyes as wide as a deer in headlights, then I bop him up and down again, he squeals and says "I luh doo baba"...translation, I LOVE YOU MAMA. My heart melts, a few tears swelter and I respond, "I love you too bubbub, so much."

Random Thoughts and worries in this CRAZY head of mine....

So, today at the dinner table, I sat and listened to Trinity and Shannon talking, Trinity talking to me, Shannon talking to me...Tristan sitting painfully quiet. I realized that he hasn't said ANY new words lately. He has been just that..painfully quiet. I can't even begin to tell you what it feels like to think and dwell upon the idea that your son may never formulate original speech. Spontaneous words that we so take for granted, "please" "thank you" "mama" "I love you"..."hello" "bye"....so far all the talking that Tristan has done has been upon our prompting..so, essentially, he is copying words that he hears. I try everyday to remain positive and know that he will catch up, but, I gotta tell you..today is one of my days. I am having my DOWN day. SO, here I am, I am going to be in my little hole for a bit and then I will pull myself out. I feel a little trapped down here. I feel almost suffocated..I want so badly to help him get out of his "place"...but sometimes I don't think he understands me. It is maddening. I want to just open up all the doors where he has locked himself away and crawl in there for a minute. I wish I knew what it was that he is thinking. Do you think he thinks about me? Do you think he understands what I am saying to him? I want to believe that he does. That he really is just going to catch up. So, lets do that...help me out of this hole for a second....ah, there we go. *dusting myself off* Tristan is going to catch up. He WILL talk on his own when he is GOOD and READY and fuck anyone that tries to say otherwise, including his mama. Thanks for listening, I won't go down there again for a while, but, when I do...because you know I will...please listen again.

Newsletter for litte t - Month 19

19 months, already....slow down time, I have to slow you down! Tristan, you are keeping me on my toes buddy...trying more adventurous things, standing on tables, climbing up stairs and hanging your toes off the edge. Your balance is improving ever so slightly, but you are still a little weeble wobble. You started your therapy this month, both speech and occupational therapy...I know that probably doesn't make much sense to you now, but know that they are things that are going to help you use your body better, to be able to walk steadier, to play with toys you have trouble working. Ultimately, I want you to feel confident when you do things, I know that you get frustrated, just as any child would when you try and try and just can't do a certain task...I know it is even harder since you can't talk to me, so we are going to help you learn to communicate to us in other ways...through pictures and sign, until you are ready to talk. Your sessions will help you learn to understand the way that things work, include you! You are so cute. I love watching you sleep...your underbite smile melts my heart and I just adore the way that you cling to me. You are my sunshine, and I look forward to every day that I learn more about you.

Autism Rally...a family affair

What a night, what a turnout. Last night was the Candlelight Vigil at the Capitol in support of new legislation that will mandate that insurance companies cover children that are diagnosed with Autism or other spectrum disorders. Currently, there is NO law that protects our children when they are diagnosed with autism...that means that when they hit the age of 3, that parents of these children would have to pay out of pocket for much needed therapies should their insurance company not have a clause that covers them.

So, we arrived right at 6, and I was concerned that there would not be a very good amount of people, but by the time that we unloaded and got ready to walk over, the flood of people was really amazing. We put our blankets down right up front and sat together as a family. It was wonderful to see the united effort of mothers and fathers, legislators, caregivers, health care providers alike all together for an important cause. It was a grassroots effort for autism activism and we fit perfectly. There were children of all ages, all with varying levels of severity along the spectrum. Tristan was happy...I was afraid that he would be overwhelmed by the sounds, but he soaked them up...he danced by the speakers (within a safe enough distance so as not to hurt his little ears of course) we watched while he swayed back and forth to "One Love" by Bob Marley...how fitting a song to play..."One love, one heart, lets get together and feel alright"....I felt a sense of unity that I hoped for. There was no judgement...even when he was stimming, arching his back to see the candlelights, to see the palm trees as they were lit at night..but I look to my left, and right there on the lawn was a little boy doing the same thing..his mother shared a smile with me as if to say "Yeah, us too."

The speakers were amazing. There was a mother who talked about her son (now 16) who was so fargone by the time he received his diagnosis (at 4) that they emptied their entire life savings to get him the much needed treatments that helped him so well. His insurance company would NOT cover him...he was excluded just on the basis that he was afflicted with a disorder that 1 in every 150 children are now diagnosed with every day. This epidemic is growing at such a fast rate, (In 1994, 1 in 2,500 children were affected by autism ⿿ In 1999, the stats were 1 in 500 ⿿ In 2005, the numbers have risen to 1 in 166 children) and the fact that insurance companies are not recognizing or addressing this is paralyzing. The positive note, her son was standing next to her as she talked about his accomplishments, tears came to her eyes as she discussed his road to RECOVERY and that he now is a 3rd degree blackbelt in karate, holds down 2 part-time jobs, drives, and does well in school. It was great to see and to show the world that with treatment, these children...MY CHILD, can lead normal and productive lives...but, we need the help of insurance companies to get them what they desperately need.

I feel so hopeful about this movement. There were House Speaker's there and with them they carried letters from Senators John McCain and Hillary Clinton supporting the legistation. The bill is called "Steven's Law", support this bill (http://www.azleg.gov/DocumentsForBill.asp?Bill_Number=SB1263) contact your legistators and tell them how important it is...that health insurance is not a priveledge, it is a RIGHT, and our children are no different from anyone else.

For more information visit http://www.autism-society.org/site/PageServer http://www.azleg.gov/ http://www.autism-society.org/site/PageServer

GFCF, I love you

Since we have started the FULL on Gluten Free diet we have really seen some amazing breakthrus. Some examples, today, Tristan was standing on the coffee table, normally, he is pretty oblivious to me calling his name or saying no...but today, from the kitchen I said "Tristan" and IMMEDIATELY, his head whips in my direction!!! Then, here is the kicker "Tristan, please get down, you could get hurt." He proceeds to go on his tummy and GETS DOWN!!!! I was elated. Then, he was so smily with me after nap...spontaneous smiles, genuine happy baby smiles...it was heartwarming. I know that this diet/modification to his diet is helping, he no longer has the horrible diarrea that he was experiencing everyday, he is not stimming all day long, he is responding to his name more. He snuck a biscuit from Trinity last week, and within a few hours the shit hit the fan....so, I know that there has to be something to it. So, I have to report with steadfast assurity (yes, i just made up my own word) that we are staying on this GFCF diet cause it is working!!!!!

Now what?

Last night was rough, I think I cried for about 2 hours....I love my husband, I am so appreciative of his support, but, I have also realized that I need a better support system outside of just us. I don't really have a large circle of friends, not what I thought I did anyway. I am determined to find an actual group that I can be a part of that I have PHYSICAL contact with people...I enjoy emotional support, but am realizing that sometimes I feel like I just need a hug you know? I mean, hugs from 4 year olds are amazingly therapuetic, don't get me wrong...but...sometimes, bigger things call for bigger hugs, like now. Thank you to Amie, you are amazing to me...to have walked through this journey for sometime now, implemented a complete GFCF diet, STUCK to it, and help me on so many levels by listening (even if just by email LOL)...all the while raising your family too...I really appreciate you.

I have been reading a book for sometime now, Louder Than Words by Jenny McCarthy, I am sure that most of you have heard of it. Great read really, but it takes on a WHOLE new meaning when you actually receive an autism diagnosis. The book rings so true on so many aspects. I have gone back and re-read things that I once skipped over, they make sense now. What amazing woman and great writer. This book has become a new bible around here. Kinda like when you are having a REALLY rough day with your child, and you watch an episode of Nanny 911 just to help you through it?? This book helps me feel that way, I can see what she has been though, and it kinda prepares me. It helps me realize that I am not the only one that is going through this or that it is ok for him to do certain things that other kids are not doing.

So, now what?? We have a long road of therapy ahead of us, and truly, I am greatful and ready to take it all on. I know that what awaits us is uncertain...but realize with all of my being that we all love this little guy. I am certain that we are going to stick together as a family and defeat this, it's just a matter of time.

"Autism is not a dead-end diagnosis. It is the beginning of a journey into faith, hope, love and recovery." -Dr. Jerry J. Kartzinel

Newsletter for little t : Month 17

So, you are growing up on me little man....little big man I mean. Why do you have to grow so fast? I remember feeling you in my tummy...moving around so much, kicking and squirming, you felt amazing in there, but nothing compared to holding you for the first time...all 10 lbs of you! You are so sweet Tristan, I love it when you touch my face when you nurse, and on that note...what is up with the nursing lately?? I don't mind it, but geesh, you have been eating enough to feed a small country. I don't think you understand this Christmas thing, aside from trying to eat the "balls" off of the tree, you could care less about the shiny objects. I am really liking the new hugging thing that you have been doing when I pick you up. You stretch your arms out really wide, wrap them around me, and just hold on for about 10-15 seconds, being really still...I love it. I love you bub bub, you are amazing.

Love Momma.