My Zion

Jason and I didn't suspect anything until he was almost two. Everyone said he was just a "late bloomer". He didn't speak until he was almost three, and only a few words. He was severely scared of flashing lights and sounds. He never wanted to be put down. The good news is that with a diagnosis and lots and lots of therapy, his vocabulary is now florishing and he doesn't have the same sensory issues he used to have. He turned four in June. Everyday is a new trial and a new adventure with Zion. But he is our blessing and God's gift to our family. Read more about our journey in our old blog Zion's Story.

Five for Fighting: Autism Speaks

Five for Fighting is using their song "World" to raise money for charities. Autism Speaks is one of those charities. If you go to:
http://whatkindofworlddoyouwant.com/
and watch the videos as much as .49 cents will be donated to the charity designated by the maker of the video. I suggest watching "A World Where...". It tells the story of children with Autism. You can search by popularity and find it quickly.

Walk Now for Autism: Saturday, September 8th

We are getting ramped up for another Autism Awareness Walk. Autism Speaks signature fundraising event, Walk Now for Autism, will take place:

Saturday, September 8th
9 a.m. Registration
10a.m. Walk Begins

It will be held at Jordan Valley Park in downtown Springfield. We are so excited at having such a great venue this year.

Last Friday Jason and I went to the kick-off luncheon at Hickoks Steakhouse (really nice). There were tons more people that last year and already more teams signed up. We haven't even started writing letters or thinking about our fundraisers. Well, I guess I should consider our flop of a yard sell in June that raised a grand total of 168.00. Most of the stuff is still in my garage. Anyway, we have some really good ideas.

Last year we sold Zion's Tribe t-shirts at cost to those who walked. This year we are going to sell them as a fundraiser. If you fund raise for the team you can still get them at cost, but for everyone else they will cost you $20. We have gotten a better quality shirt this year. We have the American Apparal T-shirt and also the American Apparal Girly T-shirt. The Girly-T runs small.

Zion's Insomnia

I don't really know what to do anymore about Zion's insomnia. He no longer takes a nap so he should be really tired when bedtime comes around. Last night he was up till almost two, finding new ways to get me to come into his room.

At 11 p.m. he is standing in his room, throwing things at our door. He thought that I was asleep in there, but I was actually working on the computer in the kitchen. I scared him half to death when I walked up on him throwing the objects. I told him to get back in bed and took away the toys he was throwing. I turned off his music and tried to turn off the light...but he started crying so violently I turned it back on. He is very, very, scared of the dark. And hates night lights.

At 1 a.m. I thought I heard a movie playing somewhere. Sure enough Zion had his little DVD player, that they use to motivate him during therapy, on the table watching a movie. I guess they had forgotten to put it up yesterday. I put that away and tried to get him back to bed and tucked in.

He loves it when I have to go in there. Timeouts and spankings do not work. So we have to get creative. We threaten to turn off the light, or turn off the music, to take away his trains (that he lines up everynight in bed alongside him). But then once everything is gone he is still awake.

Two nights ago. We had already went to bed. Zion was in his bed also but not asleep. I woke to the sound of water, I get up and Zion is dancing in the toilet. Water everywhere. So I grab him as he is laughing at me and thunder him down into his bed and tuck him in again. He is up within ten minutes. It goes on like that for about two hours everynight.

We are actually thinking about replacing his door with one of those half farm doors, so that we can see in, but he can't get out. I am already in the process of putting everything in his room in containers so they are not easily accessable to him at night. If he sees something across the room, he will get it and bring into bed with him. By morning he has a pile of things that are pushing against him. Usually he is curled up into a small ball, because he no longer has room to spread out in bed.

Insomnia is so common in children with Autism. I just thought it would never happen to Zion. He used to be such a great sleeper. And I guess he still is once he goes to sleep. He slept to almost ten today....because he was up all night! I have heard of parents that are so exhausted because their children with autism never go to sleep. I hope that I have experienced the worst of it because I am already exhausted.

I have heard of a school somewhere on the East Coast that includes in their therapy extensive Physical Education. Its goal is to wear the children out with activity so that they will sleep during the night. I need this! Maybe I will get him into a team sport. Do they even take kids with Autism?

All the Dates are messed up a little

I guess I need to point out that we have had to remake Zionstribe.com. Jason actually forgot his blogger id and password. So we had to make a new one and then repost all the old blogs. That is why the dates are all messed up. Hopefully we have clarified by posting the original date on the top of the article or blog.

Spring is in the Air: Early March

Spring is in the air! I am so glad! It has been a really long winter. Having two little ones stuck in the house for so long has been getting on my nerves. Hannah came in yesterday and told me, “Mommy, spring is coming.” I think I trust her more than the groundhog.

Here in Missouri we went from high twenties last week to high sixties this week. Nice weather makes it so much easier to keep a child with autism entertained! Zion loves to go outside. He loves to go to the park, and if I give him enough exercise and stimulation it really makes a difference in his attitude. He doesn’t get as frustrated with other activities and he eats a lot better the rest of the day. He just seems a lot happier.

We are trying to get Zion ready for our new baby. I show him baby pictures and tell him that there is a baby in my tummy. He now points to it and says baby, but I can tell that it just isn’t clicking. He probably is thinking the other word for tummy is baby. How am I exactly supposed to get a child that has limited understanding ready for a new addition?

We are also trying to potty train Zion. He will be four years old this summer, and it would be so great if we could only have one child in diapers. He hates to be dirty, and will bring me the soiled diaper and say “yucky”. He looks at the inside of the diaper like it is a surprise. I am not sure if he knows that the contents come from him. We put him on the potty seat and he sits there so well and wipes and loves to flush, but nothing has ever come out. If I could just get him to pee or poop once in the toilet that I think he would love the praise so much, he would do it again.
Oh, well. If anyone has any ideas let me know.

Also, Autism Speaks and Cure Autism NOW have completely merged, “uniting the nation's two leading autism advocacy organizations and their cutting-edge programs for research, treatment, and family services”. (CAN website) The new name for the Walk for Autism Research will be Walk for Autism. We are already starting to plan for it. The planning meeting is next Monday night, so I am excited to take more of a role in helping. Zion’s Tribe raised over two thousand dollars last year for autism research. That money helps fund research like the Autism Genome Project. They just released a study last week about how they are researching the genetic link to autism. Here is a summary of the research article.

http://autismspeaks.com/press/agp_results.php

It is a really interesting article, especially since the CDC just updated the rate of autism in children. It has changed from 1/166 to 1/150. It makes me cry every time I hear that more children are dealing with this disease. We must do everything we can to find the cause and possibly the cure to this problem.

Christmas...Family...and Autism

(originally posted Dec. 2006)
We had a really relaxing Christmas at my parents. We spent Saturday through Tuesday there: which is totally out of the ordinary. Usually we are rushed for time and have to go five different places. No more of that. We are staying in one place as long as our kids are little. I loved it too.
My mom makes Christmas so special with lights, food, and family.

As for the kids: Hannah went crazy and just wanted to rip wrapping paper, no matter whose present it was. She barely even looked at the present. Zion on the other hand only opened his presents after I showed him the present and said "open this one". He had some that remained unopened until late into the day.

He is really hard to buy for, I never know if he will like what I get him or not. The one thing that he loved was an old time Jack-n-the-box that my mom got him. He is a little bit afraid of it, but also wants to see it pop up. So he runs to the other side of the room when he hears the music. Then laughs hysterically. Then he runs up pushes Jack back into his box, and wants you to turn it again. Then runs away. It is so funny.

I think back on this year and how hard it has been to accept Zions autism, and how our life has changed and I feel blessed at all the accomplishments he has made. I feel blessed that we have a wonderful little son that is usually loving and fun to be with. I feel blessed that we CAN get into Zions world, and that he is not more severe. I feel blessed that he can look people in the face now and wants to greet everyone that he passes. Last year at this time, we limited where we went, because of his intense fear of people and new things. He really has accomplished a lot this year.I hope he can accomplish so much more this upcoming year.

I still have a hard time even thinking about what he will be like as he grows. Right now he is young and cute, what will life be like as he grows up with Autism. I cry everytime I think about his future. I pray over him every night that something will break through in his brain that will be the key to a cure.

I don't really care when people say there is no cure, because I think a mothers optimism can help in every situation. And I believe that God can heal Zion, and I believe there has to be an answer to this stupid disorder that has stolen a part of my sons life.

Well, that ended on a good note. (smirk). We are so blessed, even though sometimes I get down on our situation, but I do believe that God is so good! Hannah, Zion, and our new baby are the joys of my life. I know God does not give us anything we can not handle. I believe that Zion was put in our family for a special reason. I see that reason everyday when I hear him say a new word or hug me as tight as he can, or yell through the house "Mommy..Mommy". I love those words so much.

Autism Speaks Walk for Autism Research 2006

Thank you for all the help and support we got for the Autism Speaks Walk for Autism Research! Althought the total is not in, and support can still be turned in through Dec. 1st, I think that our team raised about 1600 dollars . The whole walk raised about 45,000.It was a little cold, but we has a great time. We had about twenty friends and family come out to walk with us. Thanks so much! I will update this with a final total from the walk, once the donations all come in. See you then.

December 2006

Things that are going on in our life:

Hannah has memorized her part in her Christmas concert. And she is playing an angel in the Nativity Play. I can't wait to see her in her first school program!

Zion is doing fine. He has plateaued in his progress. I sorta got a talking to from all his therapists, about his floortime therapy. They said his behavior has declined and he has been harder to work with. I felt like they were saying it was all my fault, so I started crying(being all the emotional pregnant woman). I feel like I am doing pretty good with him, however three year olds do throw tantrums, not only those with autism.

He did learn how to say "HANNAH" this week, instead of "ya-ya". Which is a great step. I have been trying to be more consistant with the floortime sessions since seeing his slow progress lately. He gets about two hours of floortime therapy a day from me and then also he has it at school. He is suppose to get 6 to 8 twenty minute sessions a day. I feel like I am doing a B grade job. Especially since I have Hannah too.

I guess I may have to hire someone once the new baby comes. I hate to do that. Jason may have to take more of the therapist role next Spring. Pray that Zion gets on track with behavior and speech. And that God gives us patience and perserverence to work with him without weary.

Facts about Autism

• 1 in 150 children is diagnosed with autism
• 1 in 104 boys are on the autism spectrum
• 67 children are diagnosed every day
• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
• Autism is the fastest-growing serious developmental disabilty in the U.S
• Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
• Autism receives less that 5% of the research funding of many less prevalent childhood deseases
• Boys are four times more likely than girls to have autism
• There is no medical detection or cure for autism

Update to Zion's Story

(Originally posted October 1, 2006)

(Here is a photo of Zion for Cowboy days at school)

Since we first wrote Zion's Story things have drastically changed in many areas of his life. First of all he has excelled in Floortime Therapy. In late August he started at special education preschool. Before school began, his Floortime therapist asked me to bring Zion in to use as an example of how to implement Floortime techniques. One of the teachers asked us if we had some sort of video of what Zion was like before Floortime was implemented. I wish I had been that smart!!! The changes are so dramatic, I dont think I would have believed it to be the same child, if I didn't know better!

Zion was diagnosed last March. Seven months ago Zion would not keep his eyes open outside of our home. He was completely non-verbal. No words at all! He would babble a little: mamama, bababa, but that was all. Today Zion can say and understand probably forty words. His comprehension has gone way up also. He can take four or five commands: for example, "go get a diaper" and "go get your blanket". He is starting to try and sing the actual words to songs instead of just humming. He walks on his own and doesn't have to be carried everywhere (my back has gotten a break). We can now go to the mall and he looks around and enjoys the sight of other children and even greets people by saying "hello" and "bye-bye". The changes that have taken place are astounding. I truly believe that God sent Floortime Therapy to us.

If you saw Zion from a distance you would not believe that there was anything wrong or different about him. He now interacts with his teachers and is starting to even notice his other classmates. He absolutley loves to go to school each day. And when I pick him up he sees me from down the hall and starts screaming for me. It is the highlight of my day. On Thursday he even said, "hi mama". His first sentence. I am even crying as I write it.

He still has so far to go. Potty Training. Dressing himself. Brushing Teeth. ABC's. 123's. Kindergarten. I hold on to the hope and know that Zion will go to Kindergarten just like any other five year old. I look forward to each day because he continually amazes me.

My friend and talented artist, Jerod, designed this cool logo for Zion's Tribe when we first mentioned the name and doing the Autism Walk. The intent was to put it on a t-shirt but Zion's Mom thinks it has too much of a "grown-up" feel. We both love it anyway and thought we'd share it here and publicly thank Jerod.

Short Film about Autism

Autism Every Day is a short documentary that highlights some of the struggles of parenting an autistic child. The film is a bit depressing overall. It makes me sad for some of the parents whose struggles are worse than ours, and grateful that ours, at least for the moment, do not seem to be as severe. Choose the appropriate link below to view the film and leave a comment to let us know what you think.

Autism Every DayMinutes: 13:20
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Copyright © Autism Speaks/NYCA, 2006. All rights reserved.

Zion's Story

(Originally posted October 2006)

In many ways, Zion is a normal boy. He loves to run, climb, and play. He enjoys stacking blocks and doing puzzles just like many of his toddler peers. Unlike his peers, however, Zion does not seem to be interested in laughing and playing with other kids. Instead, he “zones out” while looking at an aquarium or playing with a string of beads. In unfamiliar situations or new places, he becomes quite uncomfortable. Sometimes he hides his eyes or lies on the floor, sometimes he breaks out into a full tantrum. Also unlike most of his peers, Zion has difficulty communicating. At age three, he only speaks a handful of words and often confuses their context. Sometimes it seems like he is in his own world in some far off place. Other times, it seems like his brain is not “wired” correctly to handle everyday word associations and social cues. Many of Zion’s challenges started as subtle idiosyncrasies during his second year of life, but became noticeable enough that he was diagnosed with Autism at 32 months. We are now on a quest to learn everything we can about Autism and its treatment. In just a few short months, Zion has made great strides with the help of various therapists – one of the most valuable being is his own mom who has regularly scheduled “therapy” sessions several times each day. Zion is speaking new words every day. He starts public preschool this fall and our hope is that he will someday participate in a normal classroom environment. For now, though, we are taking one day at a time as we celebrate small victories like hearing Zion say “mama” in the right context or a trip outside the house without meltdown.