Tuesday, July 24, 2007
Thursday, July 19, 2007
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.
Wednesday, July 18, 2007
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.
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?
Tuesday, July 17, 2007
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.
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.
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.
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.
- 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
(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.
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