Walk Now for Autism Speaks

This year we are participating in Arizona's Walk now for Autism.

Walk Now for Autism Speaks is a fun-filled, family friendly event and is our single most powerful force to fund vital research that will lead us to the answers we need. Every 15 minutes, another family receives the devastating news that their child has an autism spectrum disorder. Help us change that!

It has been almost 2 years since our live were changed by Kellen's diagnoses. It has been a long road since then, but we are starting to make progress.

Help make a difference in families with special needs kids and make a donation. All I'm asking is that everyone donate $1

Click Here to donate and help me reach my goal of $1,000

If you live here in Arizona please join the team. It is going to be a lot of fun with T-Shirts, and walking, and lots of kids with Autism! Join the team and start fund raising.

Therapy

Sorry I haven't posed much lately, I find it easy to blog about Autism when things are going good, and Hard to blog when things are not. I hate coming across negative, and when we are having a hard time I feel like my blog is just one big negative blah.

So on the up and up. I just had a meeting with Kellen's case worker and told her all the things that were going on and she approved Kellen for an additional 80hrs a month of Habilitation. YAY!!! this is very good!

So what does that mean?

Our lives revolve around Therapy, with out it Kellen would not be able to make sense of his world. Kellen gets 1hr of Speech Therapy a week, 1hr of Occupational Therapy a week, 20hrs of Habilitation a week, 20hrs of Respite care a week, and goes to Pre-School 3days a week where he receives more OT and Speech.

The fact is that Therapy is apart of life for Kellen, and for any family that has a child with special needs. We don't really get the luxury of just hanging out doing what ever just having fun. Kellen's every day is filled with being engaged, and stimulated. With out it, he would becomes self destructive.

The face of Autism

What do kids with Autism look like? They look like everyone else. They don't have some deformity that when you see it you say to yourself, "Ohhhhhh I see, that explains a lot." Some may talk a little different, but they still want want what every kid wants.

To have fun!!!

That is what I love about Kellen, he ALWAYS wants to play!!! he is the funniest kid I know, and I wouldn't change a single thing about him.

Walk Now for Autism Speaks

This year I am going to finally do this! For some reason Idaho doesn't do the walks, but now that we live in AZ I can do one!!! I'm so excited!

I am encouraging all my CA friends & family, and UT friends & family to get together and walk for Kellen.

I would love it if my AZ friends and family would join us. For AZ info Click here Let me know if you are thinking about joining us, or in another state. Maybe I'll get some T-shirts made up or something that say "Kellen Fan Club."

for all other info Click Here

Shopping

Shopping is one of those things that has caused a lot of stress for Kellen. Especially the Grocery Store. When Kellen was younger, the grocery store was very traumatic for him. He was so familiar with the parking lot and the look of everything that he would start crying the moment we parked. When we got our cart he would refuse to get in, and would cling to my neck. I felt so bad for him! I would end up carrying him through the store while he hid his little face in my neck and cried. I couldn't understand why he would do this and I would get so frustrated sometimes, other times I would want to cry with him. For the most part, we don't take Kellen grocery shopping, we don't take him to the Mall, or Target, or Walmart. Preston does most of the Shopping, while I stay home with the kids. If we do have to take Kellen we know we have 10 minutes tops!!! any longer is asking for a complete meltdown. Now that we have a Respite working it makes things a lot easier. So I plan all my shopping around when she will be here and pre-school, that way Kellen isn't forced to come with me.

To help you understand what public places are like for a Child with Autism I have attached a link to a previous post I did almost a year ago. All I have to say is, the next time you see a kid at Walmart screaming and cry, before you give that family the stink eye remember that kid might be Autistic. YOU NEVER KNOW!!! and the "stink eye" HURTS!!!

Pervious Post

Most, if not all, parents of special kids have this same problem. There is just so much going on in Stores, its so over whelming for them.

Temple Grandin Inspires me

Grandin was born in Boston, Massachusetts, to Richard Grandin and Eustacia Cutler. She was diagnosed with autism in 1950. Having been labeled and diagnosed with brain damage at age two, she was placed in a structured nursery school with what she considers to have been good teachers. Grandin's mother spoke to a doctor who suggested speech therapy, and she hired a nanny who spent hours playing turn-based games with Grandin and her sister.

At age four, Grandin began talking, and making progress. She considers herself lucky to have had supportive mentors from primary school onwards. However, Grandin has said that middle school and high school were the worst parts of her life. She was the "nerdy kid" whom everyone teased. At times, while walking down the street, people would taunt her by saying "tape recorder," because she would repeat things over and over again. Grandin states that, "I could laugh about it now, but back then it really hurt."

After graduating from Hampshire Country School, a boarding school for gifted children in Rindge, New Hampshire, in 1966, Grandin went on to earn her bachelor's degree in psychology from Franklin Pierce University in 1970, her master's degree in animal sciencefrom Arizona State University in 1975, and her doctoral degree in animal science from the University of Illinois at Urbana-Champaignin 1989.

Back in the 1950's up until they really started to understand Autism, it was considered to be a result of bad parenting. During a time in the infants life when they needed the most affection and attention, the mother was cold and with drawn... so they say. A diagnoses of Autism was the worst news a mother could receive in those days, and often were counseled to institutionalize the child. Grandin is considered a philosophical leader of both the animal welfare and autism advocacy movements. Claire Danes does a wonderful pretrial of Temple in her movie Temple Granin, which I would recommend for everyone to watch. You can get it through Netflix.

Also watch Ted TV for a talk by Temple Gradin on Autism, Love it! Please watch it. I cant even begin to express how much I want people to understand our special children.

I waned to share about Temple today because she inspires me, Her mother inspires me. Because if she can do all the things she did and is doing, then so can Kellen. Autism is not a death sentence, it's a window that has been open, when all the doors in the room have been shut. Temple is an amazing individual and I am grateful for what she has done for the Autism community.

Eating for Autism

For a large majority of kids with ASD, food is a big deal. I'm sure you have heard of a Gluten Free, Casein Free Diet (GFCF)

What is Gluten? Gluten and gluten-like proteins are found in wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, teriyaki sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.

What is Casein? Casein is a protein found in milk and foods containing milk, such as cheese, cream, butter, yogurt, ice cream, whey and even some brands of margarine. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.

According to one theory, some people with autism spectrum disorders cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people. Research in the U.S. and Europe has found peptides in the urine of a significant number of children with autism.

Kellen has been on a Wheat free, Dye free Diet (especially Red dye #40) for a few years now, per Dr. recommendation. It's only been over the past 3 weeks that we have decided to do a full GFCF diet. The reason we decided to to this now was because I was just diagnosed with a Gluten and Casein Allergies. So I figured now was a good time to try Kellen out on it, to see if would help. And with that we have also taken out All Artificial Coloring/Dyes, Artificial Preservatives, Artificial Flavoring, & Artificial Sweeteners! Nothing but whole foods, and home cooked meals. It may sound extreme, but its not to bad for us. We have been working up to this for years now. And there are so many GF foods we really aren't missing anything. Almond Breeze Milk & Ice Cream, Animal Cookies, Kettle Brand Chips, Pretzels, Vegan Butter, etc. And thus far we have seen HUGE improvements!!! It's hard to describe what kind of improvements we seen. We see a night a day difference when he gets Artificial Coloring & Preservatives.

On Saturday he had a few sips of a frozen Lemonade, which I new was going to have dyes, and sweeteners, and on Sunday he was having lots of meltdown, and high energy...well, higher any way.

To know more I would recommend this Book, Eating for Autism.

And for ideas on a GFCF diet here is a fantastic web page.

Autism Awareness Month

April is Autism awareness month, so I would like to take this opputunity to share how Autism has changed our lives. I will try to post something for every day. For more information on Autism visit Autism Speaks.

April 1st.

The change of Seasons

For a lot of kids the change in seasons can really throw them for a loop. When the weather changes from Summer to Fall, and from Spring to Summer all of Kellen's senses are heightened. One of the hardest things during this time is to get him to take a bath. I'm really not sure what it is about the bath, but it is very traumatic for him. He will go weeks with out bathing if we let him. So he will get 2 maybe 3 baths in a week, that last bout 10 seconds, and are full of screaming, crying, fighting, hitting, and a lot more. It's hard to force him into the tub when I know it's so over whelming for him. And just as quick as it comes on, the next day he's totally fine. Every day is very unpredictable.

April 2nd

Public Play ares

I know for a lot of you taking your kids to the park is a lot of fun, and probably relaxing, but not for us. Taking Kellen to the park is very stressful for me! Because Kellen still does not know how to interact with other kids, I need to maintain very close contact so that I can intervene when necessary. He gets really close to kids, touching there faces and grabbing there arms. He likes to push and tackle kids, And the other mothers don't really like that. Kellen likes to run off and wander off, so I can't take my eyes off him for a second. Kellen also has no concept of stranger danger, or staying out of the road. Then when it comes time to leave, there is the inevitable meltdown, where I end up carrying Kellen off the park kicking and screaming. Then I get to hear Kellen cry and scream for the next hour or 2. It's not like this every time, and when it's not I thank the Lord for this special moment that he as givin Kellen and I.

April 3rd

Church

One of our biggest challenges right now is going to Church. It's sad to say, but at this current moment Kellen has not gone to Church in about 2 months! And Preston and I take turns going every other Sunday. Since moving away from Idaho we haven't had the same support and help that we got there. Kellen needs constant attention and gets very overwhelmed & over stimulated. When that happens he needs to be taken out of class to calm down. But neither Preston or I can do that. Preston is teaching and I am, more often then not, in the mothers lounge with Sara. So with out an aid Kellen would be very disruptive and violent. Up until last summer Kellen was still going to the nursery, but now they won't let him come unless I agree to stay with him. He is just so much bigger then all the other kids, and can push and hit. We have been in this ward since August and they still have not found someone to be with Kellen during class time. I could go on and on about this topic but I won't, It's just really hard to keep asking for help and getting nothing resolved. I've thought about going and just dropping Kellen off in class and let them deal with it, and let them see just how much help Kellen needs, but that would be bad on so many levels. Sundays are just a hard day for Kellen, and require A LOT of Patience.