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.

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 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.

We are on the right track!

Tristan has been receiving Occupational therapies for 3 months now...I can't believe that it has been that long...has it been that long??? And Speech for about 3 weeks. We hadn't noticed huge leaps in vocabulary, but, his gross motor skills have increased greatly. He still falls a lot, is super clumsy, but, again...he is a BIG BOY!!! And, well, his mama is quite the clutz.

Well, the reason for this blog is that I wanted to share with you all a great breakthrough that we have found. My mother took me to the Woman's expo last month, and we met a man that was selling supplemental products. Now, I don't divuldge to the general public that my son is autistic..for a few reasons, 1) None of their business 2) It should not weigh into how he is viewed or treated, so, why share it 3) He is perfect to us... So, anyway...this man is talking to other people about the supplements, and I hear the word "AUTISTIC BOY" and automatically perk up. Long story short, a Mother and Father of a 2 year old NON verbal, Severly Autistic boy came to this man in desperate search for help. They had tried just about everything from GFCF diets, DAN doctors, injections, therapies..you name it...but to no avail. They started their son out on a series of supplements and within 3 weeks...YES, 3 weeks, they noticed a change. Their son started saying words, out of nowhere...then, one day, he say "Hi Daddy...." and kept growing on his vocab from there. By 5 years of age he was able to be integrated into Mainstream school and there was no trace of his once Autistic life.

I then told the man that my son was Autistic and he and his wife immediately wanted to help. Tristan is very very very sweet, social and loving..but, he does not talk. He has MAYBE a handful of words that he uses but only when prompted or modeled for him. He has NEVER said Mama, and I have to say, typing that, it breaks my heart. The system is by a company called BioGreen Systems. They are ALL natural, and jam packed with all the nutrients, vitamins and minerals that you need. Tristan is on a 4 step process and takes it in a shake twice a day. I have to tell you...it tastes amazing.

Ok, on to the good stuff. PROGRESS. He has started talking...spontaneously! My dad walked into a room and he yells with passion "PAPA!!!!" We were giving him a bath and Trinity was blowing bubbles he screams "BUBBLES!!!" I was counting cards with Trinity, he walks up next to us and starts throwing cards down like we were saying "Two, Two, Two...." he was trying with all his might to get up on Trinity's bed and looks right at me and says "UP" He was playing with his favorite bear, and he says "BLUE BEAR" I showed him a card of a train and he says "Choo Choo..." I was nursing him, and for the FIRST time ever, he made eye contact with me...he was looking right at me, clear as day....then he smiled. I am crying writing this....we have made a major breakthrough, and it is all through fixing his diet and adding the right nutritional supplements he needs. He takes a cleanse pill 2 times a day to push out any heavy metals, toxins, pollutants and such from his body...and, for the first time in his life, he had a NORMAL bowel movement.

If you know someone who is Autistic, has an Autistic Child...PLEASE give them my information. I would love to talk with them about this product. I am going to start selling it, and any profits that I recieve will go to Autism Research. I believe STRONGLY in this product, and I hope that through this, we will see an end to Autism. Thanks for reading guys....

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!!!!!

Her and Him

Yeah, I know, not the best use of proper English, but hey, cut me some slack, it's late and my brain is wrecked right now. Anyway, on to the title..her and him. Trinity and Tristan. I love that little girl...she really is something. I remember before she was born, I had a healer do a blessing on my belly...this was even before we knew the sex, and I remember we were told "She is going to change the world one person at a time." It is so true. She brings a smile to everyone she meets, she is light in a dark world and in my world. She is the best therapist to her little brother and I am so sure that she is the key to helping out of this place he is currently living in. Last night he fell, she cried harder than he did...I was sitting on the bed cuddling him and she was nestled in my curled up legs, hand on me and a hand on her brother. She calmed down once he stopped crying and while rubbing his face she says "His cheeks are so soft, *bending down and kissing him softly on his red spot* I love you Tristan...." My heart literally wept joy. I am so blessed to have such an amazingly supportive and loving daughter in all of this. Most children may act out in jealousy, which, I will be honest, before his diagnosis, she did a bit of that at his Play Therapy sessions...BUT, it is like now that she knows that there is a reason behind Tristan's happenings, she can also better respond to it.

Today they were playing, and she was so patient with him. There have been plenty of times in the past that I would hear in a sassy tone "TRISTAN!" because he took a toy away, or "AAAHH, TRISTAN!!!!!!" because he got in her way...but today, I watched silently as he did both of those things more than once, and with a patient tone and a loving tone, unaffected by it, she says "Here you go buddy, is this what you want??? This is a BALL, it's a BALL Tristan." Who needs speech when I have my own ABA Therapist right here LOL. Her and Him...they really work well together.

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

It's Official

Tristan had his appointment with the Developmental Specialist Pediatrician yesterday evening...this man was amazing with both him and Trinity. There was a 6-9 month wait for him and most other specialists, but upon me calling them last Friday and explaining our concern over the MRI and wanting a last minute 2nd opinion, they squeezed us in after hours. We filled out a bevvy of information, and he called us in. He played games with Tristan, observed him in play, did some non verbal tests, verbal / language tests, physical exam...and then, the diagnosis. High Functioning Autism. I have to say, eventhough I was pretty sure there was "something" it still a surprise to us. I feel a mixture of feelings, obviously I would wish that he did not have this disorder, but, he does, so wishing really doesn't help him much does it? On the other hand, knowing is better than not, so now we can really get the help he needs without wondering what or why he does certain things or doesn't. Today is the first day of the rest of our lives, we are going to focus on breaking the barrier. I am hopefull that we will get through and Tristan will have a great chance at living a "normal" life, whatever that may be! The doctor went on to explain that he scored very high on his non verbal IQ, that he is extremely intelligent, social, emotional and has appropriate eye contact. He thinks that it is mainly a language barrier of sorts (with some SID - sensory integration), and if we oversaturate him with language, speech and music therapy that the outlook is amazing. He was so happy that we came to see him and that we received a diagnosis so early (the earliest that he has ever given...that he ever knows of to date). The doctor also urged us to cancel the MRI. He said that they only prescribe this if there is a concern for mental retardation or cerebral palsy which he is certain that he has neither. He went on to explain that the risks outweigh the benefits, general anesthia is a tricky thing and that different kids respond differently. He has heard of children on the spectrum that have had the procedure with sedation that have actually regressed....We are going to schedule an EEG instead since Absence Seizures are a concern and those can DEFINITELY be measured on an EEG, which is a non invasive procedure!!!

My wish for Tristan is that he is treated equally. It pains me to think that someone will ever be mean to him, he is so sweet, so gentle, and because of this, so vunerable to the meanies. I am so tired of peoples obsession with perfection and their sick way of pointing out people's inadequecies and only hope that if this happens with Tristan, that I am there to put them in their place. When did the world become so heartless? I know that we have a long road ahead of us, but luckily, we have a really big bag of snacks, ton of tricks up our sleeves, and enough love to fill a small country to get us through it.

Tristan and Jenny

I love our EI Therapist...in the months that Tristan has been working with her, we have seen great leaps in his development. He adores her, and she him. I love how she interacts with both him and Trinity (although, Trinity can be a bit of a pill sometimes when she is here..but, it is to be expected). We have played at Bounce U together, done numerous fun things here...she is really a great person. Tristans face lights up when she comes over, and that makes me happy. During his last session, we saw something that we haven't seen before...a true connection. He really connected with her and interacted more on a one on one level. This is huge. He has also been doing this with Trinity, whereas before, he would be happy just spinning a wheel in the corner..he actually watches her, and mimicks what he sees. He has his MRI on the 18th of January to rule out any possible precursors for the delay, I am starting to become more hopeful that they will not find anything....I am seeing so much more in him that we have only hoped to see. Thank you Jenny for all that you have done with Tristan, here's to many more sessions of wonderful therapy..for all of us, it really works.