Thursday, August 19, 2010

I am - August

thankful for amazingly supportive family and friends
so proud of my family
getting a bigger belly everyday, and loving it
nervous about Tristan starting preschool
proud of our chemical free home
having a hard time with finances
wishing that it would get yesterday
proud of my photography
feeling creative
overwhelmed with the idea of changing t's diet...AGAIN
still wishing on stars and hoping for miracles

Wednesday, August 18, 2010

This is our journey...we have to stay on track.

Everyday, it's a journey for us. We balance our life with Trinity and helping her to be the happy and well adjusted caring kiddo that she is. We strive to provide all the support and love that she needs and hope that she understands why her sibling dynamic is so different than her friends. We hope that she will always love him the way she does now, and that she will never resent this life or what we expect from her. We love our children. We hope that everything we do for them is seen and felt. I just know that one day, it will pay pays off everyday, little by little...but the jackpot, the big one...I hope we hit it one day and Tristan loses his autism diagnosis completely.

Today...I am a little overwhelmed. We have had doctor's appointments up the wazoo, and now, we have MORE allergens for little t. Tristan has completed another round of allergy testing. We have a whole new list of things he can and can't eat...the bigger list is what he can't eat. He is now on a no Phenol diet...which is REALLY stinkin' hard. Anyone out there that is familiar with this diet, help me out please, cause I am overwhelmed. I stumbled across a great blog today, one of another mother who has and is traveling through this journey like we are. She posted a letter that I wanted to share. It touched me, to my core really, and I hope that you read it, if you are going through a similar situation, that you can absorb it, and move on to help your little one. We are trying, everyday, to find a way to help Tristan the best we can. I hope that we will find that one thing that does it for him, but I know it's not going to be that easy...until then, we will keep searching.

Thank you to all our friends who have offered help, to family who is understanding and accommodating...thank you to everyone who loves us, and our children for who they are. We think they are pretty great, and will only get greater with time.

An Open Letter
By Jon Gilbert

The other day that mom with the little boy who was making so much commotion in the fast food restaurant noticed you staring at her. He was a handful, wasn't he? His screaming was incessant

and the way he was challenging his mother: unacceptable. It's understandable that you would never allow your own child to holler at you like that, or bounce between the booths. You found yourself wondering what would possess her to bring an unruly child like that out into public in the first place. As your respectful children stood beside you in silence, you wondered when he would just be quiet. And you wondered what kind of mother she must be.

If you only knew what that mom wonders.

She wonders what she can do to get him to stop screaming. Sometimes it lasts all day, and lately, it's been almost every day. Then, while you put your kids back in the car, she wonders if he'll keep his seat belt on for the entire ride. You will get them home and they'll head right upstairs to play together nicely. She wonders if he'll decide it's time to begin switching the lights on and off repeatedly, or throw to everything that's on the desk onto to the floor.

When your kids fall down, you can ask them where it hurts and they can tell you. It hurts the other mom that all she can do is hold her little boy and wonder when he'll stop crying. Later, while you wonder what story you will read to your child tonight, the mom you know nothing about will once again cry herself to sleep in her husband's arms.

You wonder later why God would give any child to "that kind" of parent, yet she's thankful that God chose her. You judge the stranger based on that one incident, while she wonders why you didn't just ask if you could help. She probably wouldn't have taken it, but she would have appreciated the gesture.

Your four-year-old has mastered the art of conversation. She find's it triumphant that her son mumbles, "go school" and "want eat." You already wonder what your child's high school prom will be like. Meanwhile the other mom wonders when her four-year-old will potty train.

You wonder who your little one will marry some day, while the mom with the rambunctious son worries that he may not graduate from high school. You plan to send your child to the best university, and the lady that you
never met wonders if she'll have to care for hers as an adult.

While she's not jealous that your kids obey, talk and dream, she does wonder what it would be like to be able to call her son "normal." He is who he is. There's no altering that, and his mother wouldn't change him for the world. But feeling your eyes burn through her melts her soul. She does the best he can, and wonders why you judge them both.

She doesn't ask for your sympathy, just your understanding. Her family puts a lot of time and effort into helping him become the best somebody he can be. You don't see it, but that's all right, because his mom sees it every day. She sees the victories as well as the defeats.

You cast your judgment based on the one day you saw the unruly child in public. No one faults you for that, because the other mom used to do the same thing, back before her son's diagnosis. All the mom asks of you today is compassion and consideration.

Tonight, when you tuck your kids into bed, be thankful for the children you have and for who they are. Understand that, while you are getting butterfly kisses from your little angel, there are parents wondering when theirs will be able to say the words, "I love you."

Thursday, August 12, 2010

Kids can be so cruel...

Trinity and Tristan go to a little playgroup at the gym called "Kids Club". It's usually a good mix of kids, varying in ages and abilities. Backtracking a bit, Tristan had a food compromise (which means he ate something that he is allergic to, thus affecting him nuerologically/sensory and it just makes him act "wonky" as sister says). At any rate, he still went to play, and we asked that Trinity just help him a bit more than usual. I broke down at dinner last night...I found out some things that made me so much so that it stuck with me through-out last night, and into today, it will most likely stick with me forever.

Tristan was trying to play with some children, and Trinity said they were forming a circle around their toys and with arms spread out in front of them, saying things to Tristan like "NO, you can't play with have germs!" when I asked T why they were saying that, she said it's because he sticks toys in his mouth. She said that they hide their food because he tries to eat it...and they call him names. What the hell? Where are the attendants? When did this become OK behavior? I didn't think that ganging up on a special needs child was something considered acceptable playground behavior. She said they continued to do things like this the whole time they were there. They used chairs as a barrier to keep him out, locking themselves under the table...that they were afraid of him. WHAT? My boy? I don't understand where this is coming from, and I am so saddened to think that these children have such a skewed reality of what and who Tristan really is. Trinity defended him, and said "He's a nice boy...he just is different." Why did she have to do this? Why didn't any adult step in?

This, my friends...this is my nightmare. I am fearful for my boy, for the judgement, the ridicule, the lasting affect that these words and actions can and will have on him. Shortly after the "attack" Tristan proceeded to destroy the room. I am sure he was lashing out of sadness, frustration...I can't say that I blame him. How else is a child that cannot talk supposed to have his words heard? He knocked down an entire bookshelf of toys. He even managed to escape from the room, and get all the way up two flights of stairs to run to the sanctuary of his dad. HOW DID HE GET OUT OF THE ROOM??? WHERE WERE THE ATTENDANTS? I am so fearful that this will be an ongoing problem...that children will continue to be mean, that adults will continue to get frustrated, that Tristan will continue to be ignored.

Monday, August 9, 2010

Happy 1st Day of 1st Grade!

It's amazing what a year can do...I remember when we sent Trinity off for her first day of Kinder...I was a wreck. She was a little ball of nerves, which quickly settled, but me...all day long trying to keep myself occupied, phone at my hip at all times, checking the clock and her schedule to see what she was doing at any given time. A wreck...a complete and utter mess. This year, totally different. We went through the usual motions, buying school supplies, picking out her outfit, packing her lunch, getting all her items ready for class. This year she will use "the big kids" restroom, whereas in Kinder, they had a private, we had the potty talk "now, Trin, you know nobody needs to go in the potty room with you right?" We took a little family photo before walking her to school.
Everything was simple, no anxiety...relaxed. We took her to her class, she gave us both a quick kiss, then handed her bag to her teacher and sat down to get to work. So proud of her independence, her even temper, and her joy of learning. She has definitely come a long way from that little apprehensive Kindergartner that we once knew. Way to go have made it to 1st grade!!!!