What is God?

I don't know where Zion learned the phrase "Oh my God!", but it has become an obsession of sorts. He says it all the time. I have told him to say "oh my goodness" or "oh my gosh", but it is hard for him to change once he gets into a habit.

The other day he had to have a tooth extracted. We took him to a pediatric dentist because we thought they would put him to sleep while doing the surgery. We found out later they didn't. He did well because he didn't know what was coming. We then had to take him back two weeks later to get the spacer put in so the permanent tooth could grow into that space. Well, this time he knew what was coming. He had been here before and was very anxious over what was going to happen. Jason was not allowed back and actually had to sign a release for them to strap him to the table. When he was done he was traumatized. Jason told me later that all Zion could say was "Oh my God! Oh my God!" over and over. Now when an exciting or anxious event happens Zion starts reciting his "Oh my God!".

Anyway, I think I am making an impression on him. I have told him so many times to not use "God", but use "goodness or gosh" that I think he started thinking about why he shouldn't say that. About fifteen minutes ago he came up out of the blue and asked me: "Mom, Who is God?"

I told him he is "the guy who made you and lives in heaven". I had to make God something that he could touch because he is so factual and concrete he would not have understood the idea of an invisible creator who also lives in your heart. I think this is difficult for Hannah to understand, let alone Zion, who has to see everything to believe.

Anyway, I know that Zion is probably more in tune with the world and the spirit than I am. He is so sensitive to the things that God has made. He sees a leaf blowing down the road or smells flowers when they first bloom...He feels things that I can't. He is in tune with God's creation. Do I really need to explain to him something that he will never be able to grasp?

The Autism Blog

I am posting this because I am excited about the future of this kids writing. He has started a blog on how a sibling of a child with autism thinks and lives. This is really touching and I just felt so connected with him.

I think we have been different than most families regarding autism. Hannah and Zion have a unique relationship. In the beginning Zion would not play with Hannah. She had to teach him. I could hear her through the door saying, "Zion do you want to play with barbies? Zion say yes." And because he took commands at the time he would sit there and hold the barbie while Hannah made up all the dialogue. It was actually pretty funny. But I am so thankful for her and how she taught him how to play with her. Now she is his best friend.

It is so hard for siblings of children with Autism. I really believe they miss out on a lot of stuff, because parents are focusing so much on the child with Autism. Hannah sees therapists come in and "play" with Zion. She wants to play with them. She doesn't understand the ideas behind the play. Anyway, this blog is written well and a wonderful, realistic view of how a sibling feels.

To read the blog click here:
http://www.autismfile.com/papers/charlies_world.asp

Update on Zion

DECEMBER 2008

My son is so amazing. The words that are coming out of his mouth!!! Full sentences and used in the proper context. He also comprehends so much more than even six months ago. I can ask him to do two or three commands in one sentence and HE GETS IT RIGHT. Even a couple months ago he was only able to take one command at a time, example "take shoes to your closet". Now I can say, "Take your shoes to the closet, clothes to the hamper and get pj's." The progress he has made amazes me.

He is the happiest child. He loves his life. He loves people and wants them to be happy too. He never knows when someone is making fun of him. He tries everything we ask him to do. He absolutely loves affection and eats it up. I love his hugs and kisses everyday. He is so tender and loving. He makes me so happy each day.

I still wonder about his future though. I pray each day that his progress will continue and not fade out. Although life in our household is so much easier Zion still has some idiosyncrasies. He still has trouble with the phone ringing. He smells everything before he will touch or taste it. He still has little episodes of complete hyperactivity and absolute craziness when he is too excited or has sensory overload. He has a lot of trouble with yelling out in class, and home (He is so loud!!!). He doesn't really understand personal space and common decency (He gets about two inches from your face to talk to you and sorta likes to be nude).

When we (therapists and us) all thought that Zion should go to Kindergarten we knew he was going to have a rough time of it and would almost surely have to repeat Kindergarten. Not only for social reasons but also for academic. But he has continually amazed his teachers and us. He has excelled in academia and has made much progress socially. He still has a long way to go, but he is doing so great. He really has been the poster child for early intervention and how early therapy can make a difference in a child with Autism.

I am really looking forward to seeing how Zion reacts to Christmas this year. This is the first year that he has noticed ads on television and magazines for toys. He has actually told us a number of times, “I want that”. Last year it took him all day to open his presents, because he was not interested in them at all. He really didn't care about anything other than movies. This year he is excited and wants to hear Christmas stories and open the advent calendar.

Everyday I thank God for the progress he has made in Zion. I then also think about all those moms who have not had any progress occur in the last year. The ones that have children still trapped in their own worlds. I pray that a breakthrough occurs. I pray that they can somehow communicate with their child, so that they both have a connection with each other and feel the love of a parent and child. Lord please grant us a gift this year of a medical breakthrough in autism research. Let us be able to reclaim our children.

Rehash of Zions progress

Time line of events. You can find all these in our old blogs. Read the update above.

March 2008

My little boy has grown so much over the last year, that I haven't even blogged his growth because it has gone so fast. I am so thankful for all the work that so many people have put into him.

I just got the paperwork to send Zion to Kindergarten. He has his preview day March 12th. He will probably have one year with a para and then try to do it on his own.

It is a scary thing for a mom to send their child with Autism to a regular classroom setting. I am so scared. I sorta dread it as the time gets sooner. But this is just one step in his healing.

He now is talking and has a pretty big vocabulary. Most of the time we still have a hard time understanding him, but it gets clearer and clearer each day. Before his words would express his immediate need. Such as "Juice!!" or "Potty !!", Now he comes in singing the Alladin theme song. Or tells us that he wants pizza, in a full sentence. I love to hear his thoughts. I love to hear him sing. I love to hear him at all. It is joy to my ears.

I sometimes am scared that his progress will stop tomorrow. He turns five this year, the magic age of five. Where all research says that the brain slows its growth and learning slows down. I fear that he will stay at this stage forever. Then I have to remember how wonderful he is, and affirm to myself that if God chose to do that, I could handle it. Look how much we have handled so far. God is so good. He gave me this child, this wonderful child, because he knew that this child would need double the love and patience.

Please protect my little bird from the vultures in a regular school. Protect his heart from those who do not understand the mysterious world of Autism. May he be a light of understanding to people that are scared of things they don't understand. And may people see God in my son. Because I do everyday.

September 1 2006

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 don't 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 absolutely 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.

June 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.

Sarah Palin's Speech on Special Needs Policy

No matter who you are going to vote for in November you must admit that times are changing for the special needs community. Awareness and Education are making a difference. I just watched Sarah Palin, the Republican nominee for vice president, in a news conference saying how children with special needs would get more attention in their administration. She has and will in the future bring to light to the difficulties and triumphs of families who have a child with a disability. She has a child with Down's Syndrome and also a nephew with autism, so she is in the same boat with many of us.

I am so glad that someone is taking notice of how parents of children with a disability are striving to find appropriate care for their child, and mostly they do this all out of pocket because schools don't pay for everything. Jason and I have been fortunate to live in a school district that is very good at trying to fulfill our requests for Zion's education. But what about those parents who live in cities that have inadequate education, no special services, and no-one educated in the profound disabilities of those with autism. It was awesome to hear that with Palin as vice president, education funding would be portable for those who have special needs. Parents would be in charge of their child's education and have the ability to choose the school that is right for their child.

For example, there is a school that specifically treats children with autism in Springfield, that is too expensive for most families. Some profoundly autistic children need to attend this school, but the parents are unable to find funding. Palin says under their administration funding would follow the child to this school even though it is a private school. This is amazing!

Also, in her speech she said that the IDEA would be fully funded under Mccain/Palin. The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.

With a fully funded IDEA children would be able to receive services earlier, which you all know is paramount for getting the upper hand with autism. Did you know there are studies coming out that can discern in infants some autism characteristics? Early intervention has been a specific key in how well Zion is doing today. Every parent needs to have infants screened and tested and also have those services provided to them, in order to decrease the most severe side effects of the disability.

Whole new goals open up for my son when people in the administration start putting our kids first instead of earmarks and special funding for crazy projects. It might mean the difference of Zion living in assisted care as an adult or Zion realizing his goal by going to college and becoming an astronaut!!!

Zion's quote: “Mama! First brush Zion's teeth, then fly on spaceship!”

Walk Now for Autism a Success!

I am so excited to tell you that the 2008 Walk Now for Autism was a success. Thanks to all the people that helped put it together and the ones who got out there and walked. The grand total for the event is over fifty-six thousand dollars. That is so cool. I think each year we will see a dramatic increase in the amount we raise. With that money, Autism Speaks is doing great things in furthering the advance in research and knowledge about autism.

On behalf of Zion's Tribe, I want to personally thank you for supporting our team: Whether it be giving money, buying a t-shirt, or sharing your friendship with us. I am happy to say we raised two thousand and fifteen dollars this year for Autism Speaks. I am so excited to know that our team made a difference. As I see Zion thinking and playing more like any other five year old boy, I hope that the money we raised goes to more awareness and goes to advance research into cures and causes. Zion is doing so well because he was diagnosed so early. This awareness will help other parents recognize the symptoms at a very young age and get intervention earlier. That is the key to getting the upper hand on this disorder.

Earlier this week, a neighbor who knows about our personal journey with autism and our involvement with Autism Speaks, stopped by the house. He wanted to know if he could share our contact information with some friends whose daughter has just been diagnosed (at age two). Of course we obliged and I was remained about the difference that Autism Speaks has made in the few short years since we were in that position of receiving what seemed like a hopeless diagnosis. From resources for families such as the "100 day kit" to internationally coordinated research efforts and awareness campaigns. Autism Speaks is making an impact at many levels.

We are so happy to see the dramatic changes that are taking place in our son. He is now fully communicating with us and we can understand most of what he says. His understanding of what we say to him is growing exponentially. He spends most of his day in a regular Kindergarten class doing the same things the other kids do. The Floor-time therapy that we were once striving to learn is now fully applied in our home, like it is second nature. We still sometimes go back to the complete basics of commands and hand over hand manipulation. But as the time goes on our little boy is coming out of his shell. He is a social being, wanting attention and affection more than any of my children. He is a sweetheart!

Anyway, thank you for all your support. We are already excited about next years Autism Walk and are planning some team fundraisers like a trial run or mountain bike race. Keep checking in with the website. God Bless.

Tara

Walk Now for Autism

Saturday September 13, 2008 at Jordan Valley Park
Register and Resource Fair Opens - 9am
Walk Begins - 10 am


This is our third year walking in Autism Speaks Walk Now for Autism. We are doing it again because it is so important!!! And we need you to help us...Join our team and walk with us!!!Even if you can not attend the event, you can be a virtual walker and still raise money for the team. We need all the help we can get.

Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

Did you know…
• 1 in 94 boys is on the autism spectrum
• 67 children are diagnosed per day
• A new case is diagnosed almost every 20 minutes
• Autism is the fastest-growing serious developmental disability
• Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases
• There is no medical detection or cure for autism

That is why we walk for our son Zion and all the other children out there on the Autism Spectrum. My son Zion turned five this year, and is starting Kindergarten in the fall. Zion has come a long way since he first was diagnosed with Autism at the age of two and a half. He was completely non-verbal and really did not take any direction from us. Then we had a Floortime Specialist start working with him.

During the first session with her Zion was giving her high fives and getting him to do things that we had never seen him do. She also taught us how to work with him. The year after his initial diagnosis was the hardest year of our lives. We had enrolled Zion into Developmental Center of the Ozarks and we were doing Floortime therapy when he got home. Once Zion got into the special education preschool we continued Floortime, but also hired two ABA therapists to work with him four nights a week in our home. Still today we have a therapist come in twice a week to work with him. Our schedules, our finances and our lives revolve around autism. But it has always been an easy choice for us.

When he started preschool he had maybe a five-word count. Today he can tell me his phone number and address, count to twenty, and definitely get his point across. His vocabulary is flourishing and we are amazed everyday as he forms complete sentences and really develops his own personality. We have learned so much on this journey and Autism Speaks was one of our big teachers! Please help us raise money for this valiant cause.

Raise awareness, Raise hope, and Raise an answer.

Join our team. Raise Money. Walk With Zion's Tribe to Raise Awareness.

Click Here.
Join Zion's Tribe Team

Getting Ready for Kindergarten

Today I took Zion to get his Kindergarten Check-up and immunizations. My doctor asked me nicely (because she knows it is a sensitive subject) what I wanted to do today, regarding what shots I wanted to give him. Even though I wanted to just not get any, I realize I don't really have a choice. He must have immunizations to get into Kindergarten. I know some people lie to get around this, but I just don't feel right about doing that. Plus, I believe in immunizations, I just think there are too many at too young of an age.

Anyway, I chose to get the four shots he needed. I figure that he in now five years old and his brain is almost fully developed. So I pray now that there are no side effects of the shots. So far, I haven't seen him act any differently.

When we got into the exam room he laid down on the table and said, "Ahhh, my room!" That shows how often we have been there huh? And when all the nurses came in to help hold him down (for shots), he said, "Hey Girls! What's going on in here?" All of us busted out laughing.

He also thinks that anyone that works at a medical office is a doctor. So he addresses everyone by "Doctor": the receptionist, the nurse assistant, the nurse and finally the doctor. He called our nurse whose name is Summer, "Doctor" repeatedly. She would tell him, "No, I'm not the Doctor, my name is Summer." He would call her Doctor again and she would say they same thing. After the third time he thought about it and said, "Okay, Okay Doctor Summer". Even after they gave him shots he said thank you Doctor's! What a sweetie.

He was just plain hilarious today! He also gave lots of hugs. He pretty much loves everyone and is just so happy to be with people. He thinks everyone likes him and wants to cuddle with him. I am blessed! I also love our Doctor and her team of nurses!

His Pediatrician told me today, "You guys (Jason and I) are doing such a great job with him. I believe you are reclaiming him!" That meant so much to me. She has been in our lives and saw Zion go from completely non-verbal, no receptive language, bad eye contact, major sensory issues to the sweet little boy he is now. She was the one who first diagnosed him and referred us to first steps at age two. She is on top of her patients and I appreciate her so much!!! Anyway, hearing that was awesome. We have worked so hard! It has been our parental focus and our families focus for three years now. And we have and are seeing tremendous results!

School starts in one month. I can't believe he is going to a neuro-typical kindergarten. We have made some major progress!!!

Summer School is Over

Last Friday was Zion's last day of summer school. It lasted about a month. He was in a neuro-typical, average kindergarten setting and he did amazingly well. He had his floor-time therapist with him two days out of the week and a para for most afternoons. Mornings though he was on his own. The biggest obstacle that he seemed to deal with was falling asleep. I tried to remedy the situation by getting him in bed by eight pm, but nothing helped. He kept falling asleep in the afternoons.

The Early Education Program for special needs was only a half day so this was the first time he has been gone all day. It just wore him out. When I would go and pick him up from school it looked like he had been through the war. I usually got wonderful reports, but the second to last day when he was offered a wet wipe for his hands, he pulled down his pants in the classroom and used the wipe on his bottom. Oops! Can't do that in school! So we will have to work on that. (I found out right when I got home that he was sick to his tummy and had diarrhea, poor baby).

So the plan for kindergarten is to try to do it on his own for the first two weeks and then we are going to ask for a revaluation and see if he is doing good, or needs extra assistance. I asked the Kindergarten Summer School teacher and she said he did better when someone was there pushing him to work. I hope we won't have to fight this point and they will be able to find someone quickly to fill this spot.

So that's the update. No summer school so we get to sleep in everyday. Well, except Zion. He has an internal clock that wakes up way too early.

Night Terrors

Oh my gosh! It used to happen all the time but we had a reprieve for probably six months. It has started again. Night Terrors, Night Mares and just waking up in the middle of the night and wanting to sleep with us.

The Night Terrors are so scary. We usually hear Zion screaming, it scares us awake. Then we hear his feet on the wood floors. Jason or I jump out of bed and find Zion running from the other end of the house, screaming, and looking behind him. It almost looks like he is running from something. He doesn't even seem to see us. It scares me to death. I almost feels like there is someone in my house that he is running from.

The Nightmares consist of him just being scared to go to sleep. He always wants the light on. So the house is practically lit up like a Christmas Tree at night. I like for it to be completely blacked out when I am sleeping, so when he sneaks into our room at night and doesn't shut the door behind him, it leaks in a sun ray of light into my bedroom and wakes me up. I can't go back to sleep like Jason can, so last night I stared at my ceiling for two hours until I finally fell back to sleep for thirty minutes when my alarm went off.

He is so sweet and cute. I want to protect him, but when I have such a lack of sleep my inner beast comes out. I get so frustrated with him. I really have to control my temper. I wish he would just sleep like my other kids: Through the night without a peep.

Here is a great article describing what I am talking about with night terrors.
http://special-needs.families.com/blog/night-terrors-how-to-help-your-child

The IEP Process

If you don't know what an I.E.P is then you probably don't have a child with a disability. An I.E.P is a Individualized Education Plan. It is the guideline or plan that the school has to work through for the education of your son or daughter. Every child with a disability must have one.

Zion had his Kindergarten I.E.P. meeting today. I was surprised to see all the people there. We had his teacher and therapists from his preschool and all the new teachers and therapists, the process coordinator, his floor-time therapist and even the principle of his new school. I have never had a principle come to an I.E.P. before, I was pleasantly surprised.

We reviewed what the neuro-psychologist submitted on Zion and then what the scores were for the tests the school did. His IQ has increased to a 65. Which is still in the mildly retarded range. He has no clue about abstract thought though. He can not pull much random information out of his head without a choice or prompt. We will be working on this all summer.

The I.E.P. Consists of the schools plan on how Zion will be placed in Kindergarten and the amount of minutes he will get of special services: speech, occupational, and developmental. He will continue getting 60 minutes of speech. 30 Minutes of OT. He will also have his developmental therapist hopefully twice a week. He will be in special education class only 30 minutes out of the day. They have Zion starting out on his own in Kindergarten. He will not have a para (aide) working with him other than when he is in the special education classroom. This scares me to death. I can imagine Zion in a classroom and the teacher telling the children about math, or reading and Zion preoccupied with the faces of the other children: Or staring out the window. His preschool had five students in it, and three teachers. So he always had someone prompting him to work.

The team said that the I.E.P. was fluid, meaning that it can change if Zion does need extra services, but I am just worried that he will check out or regress before we get that accomplished. What if he gets too far behind and then needs a para. to help him catch up! It may be that my fear is totally unwarranted, Zion may do marvelous and this may be the step he has needed. I pray that this will be the case.

I guess we will see how it goes. Jason and I are excited to see if he flies in Kindergarten.

2008 WALK NOW for Autism

Walk Now for Autism
Saturday, September 13th 2008
Jordan Valley Park

SAVE THE DATE

Our team Zion's Tribe, raises money for Autism Speaks so that we can raise awareness about this devestating disability.
Check out www.autismspeaks.com

Rally in Washington, DC. June 4th, 2008

Just want you all to know about a rally in Washington D.C. on June 4Th. Jenny McCarthy and Jim Carrey are leading a march on Washington to raise awareness of how vaccines can harm the fragile immune system of a child. They are calling for the CDC to green vaccines. Here is a quote from the Talk About Curing Autism (TACA) site:

The cause of this epidemic of ND's (neurological disorders) is extremely controversial. We believe the primary causes include the tripling of vaccines given to children in the last 15 years (mercury, aluminum and live viruses); maternal toxic load and prenatal vaccines; heavy metals like mercury in our air, water, andfood; and the overuse of antibiotics.

I am not sure of when Zion got Autism, or if he had Autism from birth. But I know that he did laugh, he did play like a normal baby, he did say mama and then one day he lost it. He didn't say mama again for over a year (with lots and lots of therapy). If the trigger was vaccines or the trigger was chemicals in the foods he ate: I just want answers so that maybe I can prevent Caleb (Zion's baby brother) from regressing or other children in the world. More attention and research needs to be made on this front, and doctors need to listen more to moms who say that their child spoke before the vaccine and then after he didn't.

It would be so awesome if we could have hundreds of thousands of people show up to overwhelmingly show our support in calling for a massive re haul of the shot schedule and maybe open a few eyes to the way Autism has affected the lives of our families. I support any organization that brings attention to Autism.

Jason and I really want to attend this rally, but money is tight....so if anyone else wants to attend and wants to share a hotel room/taxi please, get in touch with me. I also may be having some fundraisers over the next couple of months to pay for it. Anyone want to buy a cookie?
http://talkaboutcuringautism.org/jenny/dc-rally/green-our-vaccines-rally.htm

Ten Things Every Child With Autism Wishes You Knew

My friend Vicki forwarded this on from another friend of hers that has a child with Autism. She found this excerpt from a book by Ellen Notbohm, Ten Things Every Child With Autism Wishes You Knew

1. I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

Here is why a “simple” trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).
Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Please just tell me “It’s raining very hard.”
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Here’s a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm .
I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8. Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.

The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead?
All that I might become won’t happen without you as my foundation. Think through some of those societal ‘rules’ and if they don’t make sense for me, let them go. Be my advocate, be my friend, and we’ll see just how far I can go.

Autism: The Musical

Jason and I watched Autism: The Musical on HBO last night. We actually ordered HBO just to see it. We cried our eyes out, then cheered our hearts out! It was so touching and so wonderful.

The documentary follows children with Autism through a six month process of creating a musical. Each child has a special part and we follow the child as they discover what they can accomplish. It was so wonderful to see them succeed in memorizing lines and learning their parts.

The hardest thing to watch was the mothers and fathers lives and the effects that having a child with Autism has on them and their marriages. Divorce is so prevalent in marriages where they have a child with Autism. It causes so much stress on a relationship. The child needs so much attention that the wife and husband have a hard time devoting time to each other.

I saw Zion in so many of these kids. Most videos related to Autism are about what a child can not accomplish, this film is about love and hope and about children succeeding. It is amazing.
I highly suggest that you see it on HBO or buy the DVD.

http://www.autismthemusical.com/

My Zion is going to Kindergarten.

My little boy has grown so much over the last year, that I haven't even blogged his growth because it has gone so fast. I am so thankful for all the work that so many people have put into him.

I just got the paperwork to send Zion to Kindergarten. He has his preview day March 12th. He will probably have one year with a para and then try to do it on his own.

It is a scary thing for a mom to send their child with Autism to a regular classroom setting. I am so scared. I sorta dread it as the time gets sooner. But this is just one step in his healing.

He now is talking and has a pretty big vocabulary. Most of the time we still have a hard time understanding him, but it gets clearer and clearer each day. Before his words would express his immediate need. Such as "Juice!!" or "Potty !!", Now he comes in singing the Alladin theme song. Or tells us that he wants pizza, in a full sentence. I love to hear his thoughts. I love to hear him sing. I love to hear him at all. It is joy to my ears.

I sometimes am scared that his progress will stop tomorrow. He turns five this year, the magic age of five. Where all research says that the brain slows its growth and learning slows down. I fear that he will stay at this stage forever. Then I have to remember how wonderful he is, and affirm to myself that if God chose to do that, I could handle it. Look how much we have handled so far. God is so good. He gave me this child, this wonderful child, because he knew that this child would need double the love and patience.

Please protect my little bird from the vultures in a regular school. Protect his heart from those who do not understand the mysterious world of Autism. May he be a light of understanding to people that are scared of things they don't understand. And may people see God in my son. Because I do everyday.

Walk Now for Autism a Big Success

Thank you all so much for making the Walk Now for Autism a success. The rain didn't keep us away. It actually made it more special that so many people from Springfield and the surrounding areas turned out. The money is still being counted, but our team raised twenty eight hundred dollars. That is so awesome, five hundred more than last year!!!!! The money for the entire event is still being counted, but at last count it was 43,000 for Autism Speaks. They will then fund research to find a cure or cause for this disorder that is taking away a generation of young boys and girls. Autism Speaks is also giving grants to local service providers...so now our local community can see the difference we are making in the lives of our children.

Here are some pictures of the day:

Walk Now for Autism: This Saturday--September 8th

Please Join us RAIN OR SHINE at the 3rd annual Walk Now for Autism

This Saturday, September 8th at Jordan Valley Park Springfield, Missouri
9am Registration
10 am Walk Begins
Breakfast and lunch are free. The Registration table and resource fair are inside Jordan Valley Ice Rink and the concessions are under tents, but just in case bring your umbrella!

Don't forget to wear your Zion's Tribe Shirt
We are looking forward to seeing you all there!

For more information and directions to the park:
www.autismwalk.org/springfield

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.