Can't Sleep

In case any of you haven't noticed, I can't sleep...it is 1:33AM and I just can't pull myself to do it. I don't know what is wrong with me, my mind is like a little humming bird, constantly fluttering and flitting...I can't slow it down and all I can think of to do is research. I have decided that I am going to find out as much as I can about Autism and do WHATEVER I can to beat it. This has to be cureable right? I mean, really?? We are currently on a modified GFCF diet, and as of tomorrow...we are making a trip to Trader Joes and Sprouts and Whole Foods if we have to, but we are stocking up on all Gluten Free and Casien Free foods for little t. No more slipping him an occasional cookie...no more chunks of cheddar cheese...no sir, we are doing it, 100% and all at once. I have to find a way to get him out of this. He is barely saying any words aside from JuJu and All Done, other than that, rambling, repeatative rambling. I do realize he is just 18 months, but, the stims have increased too...when I have him off of wheat, they disipate if not entirely dissapear..so, why not? Why not take him off 100%. The kid is allergic to stuff, and children with autism also have gut issues, don't quite understand the correlation, but, it seems to be the same across the board. Ok...I have to get some sleep...it is 1:38AM now, I hear my hubby and dog snoring on the floor and I need to at least walk him to bed..bless his heart. I love Shannon, he really is my best friend.

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.

Newsletter for little t - Month 18

Tristan, you never cease to amaze me. You have grown so much!!! At your last appointment, you measured 39 inches tall and 36lbs!!! You are so big. I adore you and all that you represent. This month was filled with answers for you, and us. You were diagnosed with Autism on your 18th month.....I wonder if you understand what that means. Sometimes I look into your eyes, and I see that you see me, genuinely see me, it makes my heart skip. Your love and adoration for Trinity, me, daddy and your nana and papa also melts my heart. You are just a loving little boy. Recently you learned to say "AHHHH DONE!!!!" while wildly waving your hands. You do this when you don't want to be in your seat, all done with dinner, etc. It is a major breakthrough on your communication!!! You love your music, and I LOVE watching you dance. I can't believe that in 6 more newsletters you will be 2....wow. I love you Tristan, thanks for being a part of our family.

Love Momma.

Newsletter for Big T - Month 51

WOW....what a month. You have grown so much in just 30 days. You haven't had your appointment with the Dr. yet, but we measure you and you were 47 inches tall, you feel like 50lbs but I sure you are probably more like 38 or so...You barely fit your 4T clothes anymore, can you believe it, you are wearing 6x slims on jeans and 4-5T in tops. Emotionally, that is another big WOWZA, you have had a bit of trouble with decisions at the beginning of the month, but I am happy to report that you are doing SO much better. Daddy and I have tried to help you out the best we can, because we know how hard it is to make the right and perfect choice. Your responsibility board has been a God send, we pull it out in the morning, and it seems to really keep you on track throughout your day. You have been so helpful around the house, cleaning your room, doing your dishes, picking up your toys and putting away your dirty clothes. I love watching you play with your brother. He adores you, you know...the way that he smiles at you is unmatched to how he responds to anyone else. I think you are going to help him the most with his speech. Speaking of which, I have to say, I LOVE the way you say certain words...it is so cute to hear your voice, all raspy and devoid of certain letters. Here is a little dictionary of words that you use (that I can think of off the top of me head anyway).

ES-GUIDED - excited
COOT - scoot
PUH-MEM-BER - remember
TARS - stars
KY - sky
TUPER - super
PESH-UL-E - especially
DICKS - disk
BAFF - bath
TRASS - trash

Alright Buggy, that is it for now, thanks for loving your brother so much!

Love Momma

Count down to Friday

Tristan has his MRI on Friday. I am getting a bit anxious. Shannon and Trinity are going to drop us off, being RSV season she is not permitted to enter the hospital...boy, she is going to take that hard...we have decided to wait to tell her that she can't come until mid week...so, I am sure I will be posting the events of that day later. She is so protective of Tristan. She told me that she wants to be there with him so he won't be scared. She has already picked out his stuffed animal, and packed his extra blanket for him. Its a mixed feeling....I mean, I understand the procedure and realize that he does need it for us to gain more insight as to why so many unexplainable things are happening with his development...or delay of development I should say. BUT, there is still a fraction of me that thinks...hey, he is fine. It is better to know that not know, this is what I have concluded. He meets with the Developmetal Specialist Pediatrician on Tuesday for a last minute second opinion...so, I may even repost "MRI CANCELLED!!!!" but, don't hold your breath. For now, keep us in your thoughts and prayers as we do for all of you.

Our EventFULL Weekend-Part 1

So here is part 1 of our amazing and eventFULL weekend. What a weekend indeed. It started with family time at the car show. What a great time. Trinity and Tristan loved seeing all the cars, concept and reality, ok, me and Shannon had a good time too. We meandered through the aisles of red carpets and peeked in cars that were valued at amounts 3-4 times over the average car...really, why would you spend so much on a hunk of metal? I mean, I understand an appreciation for the finer things in life, but when there is a car with a sticker price of $20K and it has over $40K in upgrades??? That just seems silly to me, and this is coming from a car girl!! Anyway, back on track. The highlight of the day was meeting and taking pictures with Bumblebee from the movie Transformers. Shannon was probably more excited than the kids LOL. We also got to see Lightening McQueen "Kapow"! It was a really great time.

Our EventFULL Weekend-Part 2

So, on Sunday we spent the day playing with the kiddos, Shannon and I were pretending to go on business trips and the kids were our "suitcases". By grabbing a hold of their footed jamas right at the belly, you can lift your child to notable heights LOL. Throwing our suitcases on the beds seemed to be a favorite. Then we decided to start our day of running errands, nothing all that glamorous, but hey, it was Sunday. Well, the fun started on our way home. We took a different route today because we decided to peek in on some of the new builds in our neighborhood. On the way home, we spot a large and stately Great Dane wandering aimlessly up and down the streets of unbuilt homes. We follow her for sometime and notice, she is definitely lost. What a sweet and amazing creature. She reminds me a lot of our old dog Max, and apparently, she reminded Trinity too (who never actually had the chance to meet Max before he passed away in 2002). I had Shannon go home and get a collar and leash while I followed her around on foot, trying to see if maybe her "pets" where in the neighboring subdivision....nothing. She clung to me like a child in a busy store. We took her home. We made flyers last night, but a part of me hopes that no one claims her. Is that selfish of me? I love her already....She is sweet, timid, shy, happy, loving...she adores the kids and our animals, and she just fits....yeah, 4 big dogs...we are always up for a challange I suppose!!!! Oh, and Trinity has decided to name her...Maxine, after my old dog MAX.

Indecisions, indecision, indecisions....

Trinity has reached a plateau in her decision making ability and it has been very....what's the right word...gosh, I can't really think of the right and perfect word to describe the feeling that I feel when I see her so overwhelmed with making the right decision. Helpless, that pretty much sums it up...I feel her helplessness. She has always been an awesome decision maker, able to adapt to change, roll with the punches, take what is thrown at her and be definite and steadfast in her choices. Now out of nowhere, she is going through some developmental stage that she is unsure and second guessing her choices. I feel so bad for her when she is handed 2 colors to choose and she says "When will it not be so hard momma?? When will it get easier?" Now, do I tell her "Honey, life only gets harder....." or, to ease her through it say "babe, it will get easier, the choices might be more complex, but, you will learn to choose" I went with "Come here, give me a hug. It's ok, you are having a tough time, let me help you pick right now." I will report that this weekend has been a lot better since we eliminated the overabundance of choices and summed it up to just 2. "Do you want ____ or ____. When she chooses, we tell her what a great decision maker she is. I guess she is just getting a headstart on becoming a woman, because Lord knows, we can't decide on anything.

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.

Santa Who???

SO, this is most likely a touchy subject for some people, but, sadly, it really shouldn't be. One of the moms on myspace sent out a bulletin exclaiming that she doesn't celebrate Christmas with Santa. She said that she doesn't understand the concept of lying to our children all year and thought that it takes away from the true meaning, Christ's birth. Now....I understand the concept, yes, the true meaning has been lost in some families, but, if you are smart, if you have faith and share the meaning of the holiday with your child and family, then why would you need to axe the man in red completely? I mean, Jesus is with us always, Santa, we celebrate him one month out of the year. I think in not celebrating Santa because you feel that you are betraying
your child, you are almost robbing them of a certain innocence that comes along with the intense imaginations that our children innately posses. I think that if you decide to kill off Santa completely, when does it end? The Easter Bunny? The Tooth Fairy? What about Disneyland...does she say, "Oh honey, that is not Mickey Mouse, that is some 14 year old girl dressed up as Mickey. She works here, all the characters do, it is just made up." When do you say, enough preaching is enough? I just don't understand it. I mean, this world all on its own is not the most beautiful place...it can be scary. We already all know that our children grow up entirely too fast...why push it even more by taking away this memory? These icon? This pure and amazing wonderment that we remember as children? This mom, she goes on to say how she felt lyed to and betrayed when in 4th grade someone slipped to her that Santa is not real...that she stood up for him, and she wasn't going to do that to her children. Bullshit. I think it is absolute crap. My children have amazing imaginations, I am going to feed those little brains as much pretend, made up, dress up, imaginary things that they want...afterall, Imagination is EVERYTHING. Merry Christmas lady...I hope that Santa brings you a big ole' lump of coal.

Gingerbread Houses - LATE POST!!!

I have pictures of this..but for some reason, they are not loading! ARGH!!! BUT, here is the post until I figure that all out!

Trinity and Tristan had homeschool group on Tuesday and it was time to make Gingerbread houses! I can't even begin to tell you how much she has been waiting for this day. She loves to construct, Tristan loves to destruct, so, it worked both ways. It was so sweet to see all the kids of all different ages smashed together on 2 large tables just going at it. Tristan knocked over 2 cartons of sprinkles, apparently, he loves sprinkles...to be everywhere. Trinity caked so much frosting on her house that I got cavities just looking at it...and don't even get me started on her sprinkle bonanza. She did it all by herself, her own little creation...it is amazing to watch them do these tasks unassisted...no more "Help me momma", now its "No thank you momma, I can do it by myself", bittersweet really. I love my kiddos, and I enjoy watching them flourish into these amazing individuals that they are becoming.

Christmas, Advent Calendars and Santas Elves

As some of you know, we LOVE LOVE LOVE Christmas!!! It is such a magical time of year, yes, aside from the miserable shoppers and people so consumed with the corporate marketing aspect of it all...but the TRUE meaning of Christmas and the story of Christ. We also LOVE LOVE LOVE Christmas through the eyes of our children.

I remember being 4 and opening my stocking on Christmas morning...my mother has a picture of me peeking into my red and white fluffy polyester stocking and pulling out a magical gold coin! My heart lept when I thought of little Elves and Santa stuffing that stocking full of treasures for my little hands to enjoy. Shannon and I think it is the most important thing that this feeling of merriment be passed on to our children. SO, with that, we plan wonderful festivities for the entire month of December.

It starts with us putting the tree up on my birthday (November 22nd) and then lighting the house. The fun comes when we wrap a couple of gifts, put them under the tree, and have NO tags on them. The next day, Trinity gets a note from Santa's Elves. The notes tell her that they left the gifts for her, they are from Santa, but obviously he is oh so busy in the North Pole, he has sent them to check in on her from time to time until he can come on Christmas. The following days are spread apart, the Elves leave little things, hang up the stockings, and this year, left her a MAGICAL ADVENT CALENDAR *oooohhhh, aaaaahhhh* [Hey, it's cool alright] Shannon bought all these nifty things at Walgreens, the dollar store etc. and packs them into the tiny boxes that adorn this wooden treasure. I am excited about tomorrow...tomorrow is CHRISTMAS SCAVENGER HUNT DAY!!!! We, umm, I mean, THE ELVES, *phew* leave her the details, and they read as follows:

CHRISTMAS SCAVENGER HUNT
Today’s special gift will not be so quick,
We have set up a path to which you must stick!The payoff will be more exciting for you, and
also your little brother Tristan too! Santa
has put together a set of clues and
different paths that you must choose.
You will need to follow these special rules
That will lead to you your treasure and jewels!!!

1) To find your special gift for today
follow the steps with lights that guide your way.

2) Once at the top you need to look
and find a special Christmas book

3) Open the book and you will see
another hint to step number 3!

4) Follow the stickers down the hall
on the floor and on the wall

5) We’re in your room, you’ve followed the rules
look under your tree, uncover your jewels!!!

Great job Trinity!!! We knew you could do it!
Did you have fun working through it?
We still have our watchful eyes on you,
Keep doing the best that you can do!

Love,
Santa & Santa’s Elves

We are going to place post it notes down the hallway with arrows and little notes that say things like "RIGHT THIS WAY" "YOURE ALMOST THERE" "GETTING WARMER" etc. It will lead to her Christmas Tree in her room...I can't wait to see her little face...I think we will record it. Maybe I will finally try and upload to You Tube and share it with all of you!!!!

Enjoy this magical time of year, remember what it is truly about, abandon the feelings of monetary guilt and share the meaning of Christmas with your family!!

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.