To Gluten or Not to Gluten, That is the Question....

Jack and Matty sharing an order of "fry fries" at the mall

When my cousin was diagnosed with Autism 8 or so years ago, one of the first things his mom did was take him off gluten and casein and it made a difference. He mellowed out, was less anxious and everyone saw an improvement. Much of that could have been a result of ABA and therapies too, he lived far enough away that I can't say for sure. He was a baby who had a lot of allergies, including dairy and peanuts, so the transition to the GFCF diet was logical.

When our nephew was diagnosed, I advocated to my sister in law to try it, but she resisted. As a single mom, it puts a drain on the budget and he didn't seem to have any food intolerances. Now that I have a child on the spectrum, I'm feeling the pressure from others to apply the diet to our lifestyle. I've done my research and asked a few professionals in the nutrition world their opinions. I'm getting some consistant conclusions from the science that if Matthew doesn't have GI issues or food allergies, that the GFCF diet probably will not make a difference for him. He isn't a child who throws up unless he has the flu, he doesn't even get carsick. His bowels have no irregularities either.

I have to say that if it weren't for the fact that the food is so expensive that it would, literally, double my monthly grocery budget and that Matthew is such a picky eater that it would be difficult to find him anything he would be willing to eat, I would give it a go. The melatonin we have started supplementing in the evenings has made a huge difference in his sleep patterns, which therefore resulted in a huge difference in his behavior overall. As a single income family, it would be a huge investment that might cause more problems than it would solve. At this point, Matthew's main dishes consist of peanut butter sandwiches, chicken strips (I try to do homemade as often as I can) and taquitos (which are gluten free). Matthew also loves his "fry fries" but if you make the kind that are frozen, they have gluten as a result of flour-lined conveyer belts. It isn't an easy change and my kid makes "picky" seem like an understatement. Restaurants are already hard given his limited tastes.

I've tried very hard to give my kids a chemical free diet, however. I try to keep preservatives, msg, nitrates/nitrites, food dyes and artificial sweeteners out of their everyday foods. When my kids consume the aforementioned chemicals, I notice a huge change in behavior- more prone to tantrums, stimming, hyperactivity, restlessness, etc. I don't think that's the autism, as Jack is considered neurotypical and he is equally affected by these items, especially food dyes, MSG and artificial sweeteners. I know many GFCF moms cringe when they hear I give my kid wheat, but I have the same reaction when I see parents giving their kids diet drinks and hot dogs.

The phrase "if you know one child with autism means you know ONE child with autism" really works in this situation. No child on the spectrum fits neatly into a box. No one treatment or therapy will work for all children with ASD. It takes the parent knowing their child and being the best advocate we can be and doing what works in our own homes.

Jack Turns T-W-O

My baby is a big boy. He is talking more and more everyday, able to identify animals and body parts and his favorite foods. This is all new territory for us since Matthew really didn't start speaking until this year...and even now, he is still below age level. Jack is definitely in the grasp of the Terrible Twos. He is overall a happy child, but if we try to redirect him to a new activity or don't read his mind, he can turn on a dime and throw the mother of all coniption fits. He loves to play "choo choos" and run and run and run. He talks constantly and eats more than the rest of us put together. He and Matty play so awesomely together and are each other's best friends.

We had a family party on Jack's big day and we'll be throwing the big par-tay sometime in November when my hardworking husband finally gets a weekend off.

A Promise to Myself

I will start writing again. I won't let the unkind words and actions of others keep me from being me. I miss writing and sharing my story, even if I'm the only one whoever reads it. I started this blog so that I could have a written history of our family life and it turned from something spiritual to something chaotic. From this moment forward, I will get back to what I love. I will share our family's story and from time to time, I will go back and fill in the blanks. If you don't like what I have to say, don't read it. For those of you encouraging me to return to writing, I thank you. I have much to share and much to catch up on so I ask you for your patience as I organize my thoughts on this endeavour.

Back to School

Matty started back to school today! He's back in Miss Dee's class and was happy to see many of his old friends return and some new friends join the class. Should be an exciting year!

Roadtrippin' to Oregon

We took the kids on their first official roadtrip this summer. We made the 2 day trip to Portland to visit my parents, brother and my extended family. We were nervous about the carride with the boys but it went pretty well. It was by no means perfect but with the assistance of the dual screen dvd player and the abundance of livestock and trains by the side of the freeway meant for some diversions in the monotony of a 20 hour drive. My parents live in Banks, OR on a 400 acre ranch and the kids were in heaven from the moment we arrived. They could run and have adventures. We got to see my entire extended family in Oregon and the boys met some cousins the same age as they are. We had a blast and we can't wait to make the trip again!

An Update on Us

We have had an insane year so far! My computer crashed out around the time Matthew started school and it took about a month to get my new hard drive from HP and I got behind on everything, especially blogging. With Matty being in school, he managed to bring home every germ known to the classroom and I spent 9 out of 12 weeks sick before he was out for the summer. Sure I've been on Facebook but that is mindless for the most part and doesn't require alot of sentence structure or structure of any kind. I'm also on the Walk Committee for the San Diego Walk Now for Autism Speaks 5K happening on September 10th at Liberty Station. If you'd like to join my team or start your own, please let me know! PS- we are also taking donations....

I have to say that 2010 was a crappy year overall. My parents retired and moved to Oregon, my bout with depression, a baby with reflux who didn't sleep through the night, Matthew's behavioral issues we later realized are synonomous with Autism, family drama, etc. It was an exhausting year that I would like to forget ever happened. This year has been amazing though. Matthew's diagnosis of autism meant that we were going to get help for him. He loves going to school and has blossomed. He didn't qualify for summer school but luckily his at home ABA kicked in right after the school year ended. His vocabulary has increased so much! He's still behind in language for his age level but he has made so much progression. He is counting, identifying his alphabet and matching shapes and colors. In the last month, he has even started engaging in pretend play. Parents of normally developing children take that aspect for granted. He knew that toys were for playing with but his playing was primarily stimming. He loved to get down to eye level to watch the wheels spin on his trains and cars rather than just be imaginitive. He liked his Buzz and Woody figures but didn't know what to do with them. Now he makes Buzz fly and he makes Woody walk. Its incredible! I can't believe he goes back to school in less than 2 weeks.

Jack is the man! He is quite verbose and still speaks primarily in jibber jabber, but he is something else. He loves to sing "Bob the Builder" and give fives and knuckles. He loves to laugh and run and make his Mommy tickle him. He just started climbing out of his crib this week...sigh. I guess the big boy bed will be the next big step. Jack is also a big flirt. Whenever Matty's BST comes to the house, Jack jumps in her lap and talks her head off. He also has this flirty look he gives her so she will make eye contact with him. I guess I should be worried, but he's so darn cute!

We just came home from a 10 day trek to Oregon. I have been there several times throughout my lifetime, and a handful of times in the last 10 years, but this is the first time I have made the drive in about 20 years. Tony had never driven north of Beale AFB or been to Oregon (he has been to Washington state a few times). He was absolutely in love with the beauty of Oregon. All of its green, lush wooded areas and rivers flowing peacefully through the city and outlying areas. My parents live on a 400 acre ranch in Banks, OR (about 30 mins west of Portland) and the kids were in heaven.

Top 10 Things a Child With Autism Wishes You Knew

I was given a copy of this in my 100 Day Kit from Autism Speaks. I cried the first time I read it because it described our life perfectly. On top of the autism and developmental/speech delay diagnosis, Matthew also has sensory processing disorder. We know with therapies, he will learn to acclimate but until then we won't be going to church very often, no birthday parties at Chuck E Cheese, no fairs or amusement parks except on weekdays in the non-busy season, graduations, dance recitals, concerts, etc. He is drawn to water as most children with autism are, so we are apprehensive about going anywhere with bodies of water that are not fenced off. Even a stream or a creek poses a risk. Matthew runs off when we are outdoors. Its not because we are lazy parents or that he is a bad kid. Rather, it is due to a neurological disconnect that relates to his lack of impulse control. Parents and caretakers of autistic children get alot of flack from alot of people, many of them well-meaning friends and family members but I hope the list below helps others to walk in all of our shoes.



1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside then I am on the outside.
2. I’m easily overwhelmed because I see and hear everything. I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.
3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.
4. Please don’t be mad at mommy and daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house or public places. It’s too overwhelming for me and they know that. They don’t go because they LOVE me, NOT because they don’t like you.
5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.
6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.
7. My house might be messy sometimes. It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk.
8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours. So PLEASE don’t talk about me like I’m not here.
9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more then my Lego’s.
10. I know I can be frustrating but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.

Matthew Starts School!

What a whirlwind week! We had Matthew's first assessment review and IEP on the 23rd, he turned 3 and graduated from Sunny Days on the 25th and on Monday the 28th, he started his first day of preschool. He got to pick out his new backpack, he chose the Toy Story backpack and wore his Buzz Lightyear hoodie. Miss Dee is his teacher and he is in a class full of kids across the Spectrum. The dropoff didn't go without a little drama. We got there early, not sure how to anticipate the morning traffic and dropoff chaos. Of course, he didn't want to listen to Mommy and Daddy and took off running on the concrete and fell and busted his lip open. His first day didn't even start yet and he was in the nurse's office. When I picked him up, his aide Miss Kim told me that he was good but really had no idea what was going on. At one point, he was so confused, he started crying until he realized the next task was lunch and that meant going outside and getting to eat. Let's see what tomorrow brings. I'm hopeful and optimistic.

If you were to speak to a young adult with Autism, the first thing they would usually tell you is that they don't want to be cured. In fact, they take the notion as an insult. Rather, they would rather see efforts and resources put into therapies and services in order to help the person with ASD to acclimate to the outside world. As a mom of a newly diagnosed toddler, and someone who has advocated for Autism since my cousin Elijah was diagnosed almost 8 years ago, I would say that educating the world around us about ASD so we can break down the walls and live cohesively. People with ASD can be very successful when given the right tools. Many of the world's brightest innovators and scientists are on the spectrum. We are beginning to see more TV characters on the spectrum with shows like Parenthood (although I'm convinced Sheldon Cooper on The Big Bang Theory has Asperger's, though that has never been written into the show). The more that is done for these kids and young adults at an early age, the more they will be able to contribute to society and innovation. My dreams are still huge for Matthew. He loves to explore the mechanics of different objects, how they work and is fascinated by numbers. I see something huge and grand in his future and its all because he was born with a brain that works differently than everybody else. Well, not everyone can be brilliant, right?

Celebrating Every Victory

Since Sunny Days started coming 6 weeks ago, we have seen quite a bit of progress. Some of Matthew's vocabulary is coming back, his cognition of letters and numbers is increasing and his willingness to learn is breathtaking. When his teacher comes, he is eager to dig into her bag of "toys" and get started. Now he completes puzzles with ease, whereas a few months ago, I couldn't get him to sit down and do one. He matches numbers and colors and loves to build with blocks.

Tonight we watched his Baby Einstein Numbers DVD for the first time in a few months and although it was always one of his faves, he totally rocked it out tonight. He knew the numbers and would say them (in a way only a Mommy would understand) and was laughing at the puppets and said "oh cool!". We had a couple of months where we didn't hear alot of laughter from Matt and it makes my heart beat with joy to hear him giggle. We still have alot of work to do but he is so bright and is able to express it more and more each day. He has a sense of humor, which is so where with kids on the spectrum. My cup runneth over.

Its a Family Affair

The first thing you hear when your child is diagnosed with Autism is how the affliction affects the whole family. Its not just the child who has chaos, it is the entire family unit. Usually, Mom goes into a mode where she does everything she can to educate herself, find treatments and work with the child. Usually to the point of near neglect to her husband and other children. I'm guilty of this to a point, but I'm trying to be aware of the 80% divorce rate amongst couples with Autistic children. Being a stay at home mom, I'm the one in the trenches with Matthew and his therapies, while Tony works long hours as a deputy sheriff and of course his weekend a month as a reservist leaves alot of time for a lack of communication, cohesiveness and togetherness. I know he wants to be here more, but facts are facts. This is our reality and we are finding ways to make this work. By the end of his 5 day rotation, I'm completely spent and usually near a breaking point. Matthew won't just go to bed, many nights its close to midnight because his brain just won't shut down. That would be ok if he would stay in bed or even play quietly or watch a movie. Often times, I'm finding he is getting into more trouble at these times. Last night I went to wash my face and brush my teeth in the front bathroom because that's where I left my stuff and he went into my room and pulled my shoe rack down in my closet and got into everything. He's absolutely exhausted but he just can't shut down. I'll clean up one mess and he will go make another while I'm doing that. When both Tony and I are home together, its better because we aren't being pulled in different directions and we can double team him. That also means that Tony and I don't have alot of time for just us.

Right now, there's not alot of focus on us as a couple, rather it is on our Autistic child and his 16 month old brother, who is a climber and manages to get into everything with his brother. We are definitely looking forward to Matthew's start to preschool so he can broaden his horizons and I can spend more time with Jack as my focus. We are hoping for respite care so we can have someone watch our kids when we need to be somewhere, or even so Tony and I can have a date night...even if its just to grab a drink somewhere. Hell, I haven't been to the movies in over 3 years.

People who don't have Autistic kids have no idea how challenging it can be and my kid has one of the more milder cases. You might catch a glimpse from time to time but that is still just one blade of grass on a football field, not exactly what I would call insight. Most of the time, my children are joyful and keep us laughing but when they are troublesome, all I can think of is how much I wish I had a prescription for Xanax.

InSan(Nicolas)ity!

The last few months have been crazy for us. For the last year, we have noticed Matthew's eye contact and language regress and diminish, while the tantrums exceeded all expectations. For awhile, we were chalking it up to the Terrible Twos but by October, we were too concerned to let it go any farther. His pediatrician noticed right away and referred us for an evaluation through the Inland Regional Center. It took about a month to get an appointment, and he was having an off day. By "off day" I mean, he took a nap before we left, ate everything we offered him and was in a good mood. Although slow to warm to the evaluators, he would gaze at them, mostly due to the incessant bubble blowing. After about 3 minutes, the token psychologist said he's fine, just speech delayed and left the room. We got our IFSP to get 9 hours a month of in home early start intervention...which took another month to get started thanks to the holidays. Right away, Matthew's teacher noticed something off besides his language. He wasn't responding to his name when called, no eye contact and would line up or stack his toys for what seemed like forever. He was more interested in how the wheels turned on his trains and cars than he was in engaging in imaginary play. I pressed the IRC for another exam.

Anita, Matthew's counselor, came through for us. She was able to get Matthew 26 hours of in home intervention for the month of February and a formal psychological evaluation. The psych eval gave me the diagnosis I was expecting- Autism. Most parents would be taken aback or fearful of this diagnosis, but I was relieved. It meant I wasn't a bad mother, it meant I would get some help. IRC cuts most kids with Developmental Delay off at 3 years old but he will be able to continue IRC and get services like Occupational and Behavioral Therapies. Matthew was also evaluated by the school district and they said by and large, he would qualify for special ed preschool once he surpasses his 3rd birthday. We have our IEP next week and I'm dilligently working on getting my notes and requests together. I know this blog hasn't been used as much over the last year. I had another blog going about breastfeeding and now that Jack is starting to wean himself, it has not been as much of a focus. This blog is our family blog and I intend to use it to record our journeys through everything from milestones, coming of age and our endeavours with Matthew's Autism.

Jack is 10 Months Old!

Jack is walking now! Actually, he is already running. He has 4 teeth and 2 more trying to push through. He and his big brother have a lot of fun playing chase and making each other laugh. He's growing up so fast, this is going by so much faster the second time around.

Matty is 2 1/2 Today!!!!!!!!!!

I can't believe how big he is getting. He's growing more and more everyday and his personality is so quirky and unique. He loves Curious George, Toy Story, his teddy, puppy dog hat, playing outside and making his baby brother laugh.

Jack is 9 Months Old!

He is such a BIG boy. He's weighing in at 20 lbs 3oz and is 27.75" tall. He's walking, has 3 teeth, including both of his top front teeth and is trying to talk. He's definitely Mommy's boy with the light hair, green eyes and pale skin. He's easy going like his dad but looks like his Mama.

2010 Walk Now for Autism Speaks: San Diego - General Donation

Tony, the kids and I will be walking with the San Nicolas and Castro Families to walk in support of our nephew Ricky, his mom Katrina and all the other families struggling with the challenges of Autism. Autism originally touched my heart when my cousin Elijah was diagnosed years ago. Please consider joining us if you are in Southern California or you can make a small donation to this great cause. Even $5 makes a difference. Thanks!



2010 Walk Now for Autism Speaks: San Diego - General Donation

Follow Me on Facebook

I'm better at posting pics to Facebook than I am to blogger. For regular up to date pics, check out my facebook page (look me up by email address or my name). Meanwhile, I will make every attempt to post something on here at least once a month, if not weekly.

A brief glance at 2010

Ahhhh...New Computer!!!!

Tony got me an early Mother's Day gift...a new laptop! I haven't been posting because it has been such a pain with our virus-ridden desk top. A quick post that used to take 5-10 minutes was taking me nearly an hour and I definitely don't have that kind of time anymore. I will do my best to update my pics as often as possible.

Happy Halloween!

Matthew was at Grandma and Grandpa's house until Halloween, when they brought him home so Tony and I could dress him up in his monkey costume. Tony took him trick or treating around the neighborhood, while Jack and I stayed home.