Where is Zion Now?

Zion is nineteen years old and attending community college. He is in the process of moving into a house in Springfield, Mo. with two other roommates. He is independent and keeps busy making youtube videos, going to school, hanging out with family and friends and enjoying activities like going to Theme Parks and community events. 

Zion has expressed a desire to take over this page. So you might hear from him soon. 

Last January we went to Walt Disney World with Zion. He got to be the center of attention for the whole weekend. His goal in life is to work at either Walt Disney World or Disneyland. He doesn't care what job he has, he just wants to work at the Happiest Place on Earth.

We found an old Blockbuster Video store in Coffeyville, Kansas. It was completely intact. Zion was so excited. We had planned to make a trip back to the last open Blockbuster Video, in Bend, Oregon next summer. This one was empty, but it fulfilled Zion's urge to go to Oregon. Such a great day for him and his nostalgic heart.

I am so blessed. I am so loved. I am fortunate.  I am optimistic.

Sometimes I didn't know if we were going to get Zion through certain times in his life. So many hard times have faced him and I am sure they are not over. But I have always been optimistic.

Last year was probably one of the hardest times in his and our life. He was not doing well socially and emotionally at school. He was being bullied, he was feeling lonely and he was feeling desperate. He would pretend to faint in the halls. He would refuse to leave the house in the morning. He would pretend or actually be sick to get out of school. He was having poor behavior and threatening to hurt himself unless he could stay home.  After a rather horrible emotional breakdown at school, his doctor and Jason and I, decided that he needed to be taken out and go on homebound.

He did well, but he was still lonely and still hated the thought of returning to school in the fall. Today he still says almost everyday that last year was the worst year of his life. And whenever we pass the Jr. High he cringes and says how much he hated that school. Jr. High is hard on every kid, but it is especially hard on someone with special needs or different abilities.

So getting back to my story. At the end of the homebound year, I found out through a friend that a new school was opening for children with high functioning autism in Springfield. We went to the open house and we were so excited. I realized that this was life or death for Zion. WE HAD TO GET HIM INTO THIS SCHOOL. It didn't matter what we had to do to make it certain that he would go to this school and the cost was considerable.

He was accepted in late July, we just had to find the funds. At about that time, Jason got a considerable bonus from his employer. It gave us the ability to pay for Zion's school year. Everything happens at the right time.

Only twelve students would attend this school; a mixture of middle schoolers and high schoolers. It seriously is one of the top ten blessings in Zion's life. He has been attending the school for a semester now and he loves it. He still has his "bad days" and doesn't want to go to school or work. But most of the time he goes without problems and works hard each day. He has straight A's and loves the different nature of the school and that he can still love beanie babies and maintain some of his habits that kids at the regular school just didn't understand or accept.

Let me tell you about this school. Like I said it is a small school. Today there are only ten students and five staff. There is a middle school room with six students and a high school class with 4 students. They have an amazing director who also has a child with ASD. She essentially developed this school so that her child could have a safe school to attend and also have the school environment that she was missing.

They DO school differently. It is interactive. They have classes in twenty minute blocks. They earn coins though out the day according to hard work and behavior, that the kids can then trade in for prizes. They take martial arts and yoga and go on a walk every day (if weather permits). The have flex Fridays where they go on field trips or learn life skills training. They also cook for each other and clean their own school building. They even have planned a trip to the space camp at the NASA Space and Rocket Center in Alabama.

The changes I have seen in Zion since attending his new school are pretty amazing. He is willing to help more at home. He is excited to see his friends and tell them about his weekend. He loves his teachers. He loves to read more. He really loves researching and taking notes. He also came home the other day with a girls phone number (oh boy!).

So I say again.

I am blessed. Jason has blessed me, by being my husband and giving me such an awesome life with these crazy kids. I am so fortunate, that we can afford this school. I am so thankful for this school that came into existence right when we needed it. I am happy that Zion is happy and I am optimistic for his future. He has his family and now he has ten good friends to share his life with. 

I haven't written in a long time. Mostly I have just posted links to other articles. Well, I think I am going to get back to the writing process so I can log our lives for posterity. :) I'm sure Zion will just love that as he gets older, NOT. However, since you are all on the autism journey with us, I wanted to tell you a bit about what is going on.

Zion entered 7th grade this past year. He has been keeping up with his grades and doing well. About once a month I get a call to come get him because he is sick. He seems to get sick a lot at school. I could tell that he just wanted to leave, because once he was home he miraculously became well again. Then a couple months ago it become more regular. He would pretend to faint in the hall or pretend to vomit need to go home. Once he gets to the nurse, he becomes mad at her because she wants him to go back to class.

He then began to tell me that boys in some of his classes were giving him assignments that he had to complete before the next day. Some of these "assignments" were benign and some were serious. He would come home and tell me what he needed to do that night and I would say absolutely not and that he needed to ignore these boys. Zion would go back to school and have to stand up for himself, which he could not do. He thought they were being friends, but they were bullying him. He became caught between Jason and I telling him not to do it and the bullies at school telling him he must do it.

Sometimes Zion would do what the boys wanted (looking up certain things on the internet) and sometimes he wouldn't because he knew it was wrong. He has become frustrated with school and does not want to see these boys or do anything related to school. We also know that he has been made fun of numerous times, which is normal for most kids, but Zion does not understand why people are mean. He is a very empathetic boy and wishes everyone was kind to one another.

Last Tuesday he became very depressed and we decided to take him out of school on the instructions of his doctors. He is now being taught by me until he gets approved for homebound school. I hope at some point to bring him back to school. The school staff has been wonderful and have tried to figure out who these boys are, but Zion is not the best with descriptions.

He had a horrible time last week. But we are getting through it. He is so happy to be home. He doesn't like the stress of schoolwork, but I have made him a ticket system so that he can work and get rewarded for it. He is actually excited to do his work each day now.

I think that this is a great move for Zion and our family. Even better is the fact that next week is Spring Break and he can return to baseline much more quickly. He will relax and have a great time at the beach. 

Zion has come so far.

https://www.youtube.com/watch?v=kkIzpH4KUBA

Autism and Behavior in Elementary School

I am not sure whether it is sensory or just defiance. How do we as autism moms know which it is? Your guess is as good as mine. I guess the answer is to try to decrease the sensory as much as possible and see how it goes. 

A little back story. Our son has had numerous incidents of violent behavior. It is really just threats, not a lot of follow through. It is accompanied with really horrible profanity directed to whomever has wronged him. Most often this happens at school. Almost always it is when he does not want to do something that he has been asked to do.

Ninety Nine percent of the time our son is kind, caring, a rule follower, and very empathetic. He really cares for people and their circumstances. The other one percent of the time, he can act absolutely HORRIBLE. It is a requirement that during the one percent times you learn to have a very thick skin. Ignore the hurtful words that he says to you and the violent outbursts, because he really doesn't mean any of it and is very remorseful after the fact.

I am able to do this. I can ignore and not take anything personal that he says to me, because I know the turmoil that he feels about his words later. However, I am sure to be the only one who can do this -other than his father. Even my other children have a hard time not feeling genuinely hated by him during his meltdowns. What friends would put up with this? Will he have any friends as he grows? 

So, back to the question of it being sensory or defiance, which is it? Maybe it is both. Could it be that his daily schedule takes every bit of effort that he can manage? Is he always on the verge or is he seriously just wanting his own way?

Sometimes I can almost see him taking notes in his head on the different things in his class room that are driving him nuts. 

I sometimes relate it to a batter in a baseball game.

The weather is cloudy  STRIKE 1

He was rushed getting ready STRIKE 2

His regular teacher is absent STRIKE 3

.........AND YOU'RE OUT

But perhaps there is a STRIKE 4, 5, 6, 7, 8

That is when the batter throws the bat at the pitcher, pummels the catcher with his fist, and turns to the crowd and flips them off. 

This is his life at school! 

He is almost ten years old. Life isn't going to get any easier from here on out. The next eight years are going to probably be worse. Hormones are going to be devastating to him. God, I need to start praying now for puberty to just go quickly.

So how do we get his anxiety under control or how do we control his environment so these outbursts and behavior don't surface? I would love suggestions. I would love thoughts and prayers heading our way. We have tried pretty much everything. 

He is a great kid. I want him to succeed. I know he will. I just want him to have friends and be able to control himself so that he is not looked at as a bad kid. He is a GREAT kid, but makes some awful choices of late. Looking for answers is not always easy. Loving him is the easy part, no matter how many times I am cussed out. I know that at the end of the day,  I am the constant in his life. I am the one he always apologizes to and hugs me with all his heart. I am the one to remind him that if it be defiance or sensory that makes him make these bad choices, I will always love him. 

It is that time again to start your running program and get ready for the

Autism Speaks: Run Before the Walk 5k.

It takes place on September 7th at 8am

You can register today :

Press Here to Register for the Autism Speaks:Run Before the Walk 5k

While you are at it, think about building a team and raising money for the Walk Now for Autism Speaks that will be taking place immediately following the 5k at 9:30. 

See you there. 

Autism Speaks: Run Before the Walk 5k

Jason and I are directing our first 5k to benefit Autism Speaks. It will be at Jordan Valley Park, the morning of the Walk Now for Autism Speaks. Registration and T-shirt/Bib pick up starts at 7am and the race starts at 8am. The Walk starts at 9am. So you can attend both events and start the day off right by running  or walking a 5k. Everyone is welcome: first timers or seasoned runners.

We are offering great running shirts and prizes for age brackets. It will also be published in the OMRR run magazine in August.

Here is the Online Registration form:
https://events.autismspeaks.org/swmissouri5k

Mother/Son Event at School

 Zion and me at the mother/son minute to win it night at the school. 

Zion listening to directions. He was so patient.

 Hula Hoop Contest. He went way longer than mommy. Actually, I couldn't keep it up at all!

 Bouncing Ping Pong Balls into a fish tank. He got three!

 Cup Stacking

We had a wonderful night. He is such a fun kid to be around. 

We are trying to sell our house so we can build our new house!

We are going to build a green home with autism friendly characteristics. So that means we have to sell the home we are in. Here is our new flickr account with pictures. If you are interested please send us a comment. :)

Check it out and press here.

IEP meeting tomorrow

We have our IEP tomorrow. But this is a story of hope, not battling for services! Zion has been placed at Ozark South for a purpose. God destined him to be there. He has become an amazing young man and wonderful citizen of the school. We are so proud of him, as are the teachers and principal. So tomorrow is not a fight, or a battle: it is a meeting of friends, to praise my little guy for all the work he has done. Thank you Ozark South and yay for Zion!!!

Our Life with Autism: The Positives

By Tara Holcomb

1.     My child always knows what time it is and keeps me on schedule.

2.     My child knows exactly what he likes and dislikes, no guessing required.

3.     My child loves movies.  If you are a movie girl like me: Movie buddy!

4.     My child loves the computer and computer games, and being a geek girl, I love trying to figure 

out a game or rewarding him with cheats off the internet.

5.     My child loves small presents and surprises. Always the same reaction: Joy.

6.     He has and probably will have, for the rest of his life, a childlike enthusiasm and excitement for        holidays and special occasions. His reaction to Christmas lights always makes me smile and his enthusiasm to the first snowfall every year is ecstatic.

7.     He loves affection from mom. He never gets embarrassed or tells mom to stop hugging or kissing him (like his other siblings).

8.     He doesn’t care what others think about him (at least at age 8). He is clueless (right now) if people are teasing him or making fun of him.

9.     He is a daredevil. He is always willing to try some new physical activity. Which is great for daddy, but scares me to death.

10. He teaches us how to be more creative parents-to him and his other siblings

Walk Now for Autism 2011 Results

The 2011 Walk Now for Autism Speaks was held September 10th at Jordan Valley Park in Springfield, Missouri. We had a great turn out, with over 1200 people in attendance. That is about 300 more than last year. We also had more teams sign up and more publicity. KTTS did an awesome job as our radio sponsor and we also had KY3 do a community interest story on their nightly news, thanks to Ashley Reynolds.  And Jack Henry and Associates blew us away with their donation of over $13,000 from their annual golf tournament. THANK YOU!!!

Our goal was to raise $88,000. Because of the economy and perhaps the generous hearts towards the Joplin tornado, we don't think we will hit goal, but never the less we had a great day and a great turn out. As of today we think our total is somewhere around $73,000.

Jason was one of the co-chairs for the walk this year and I helped with the food donation, pick-up and walk day set-up. We love helping with this organization. Autism Speaks is funding research to try to find a cure for the autism spectrum disorders. They also fund community grants, family services and awesome kits that put a plan in the hands of devastated parents.

Our team, Zion's Tribe, set a goal this year of $1000. This is a low goal, compared to last years $4300, but because of our crazy summer of travelling with Jason and family vacations we just didn't have enough time to put into our fundraising.  I think our total is going to be around $1500 this year though. That will provide a lot of 100 day kits and perhaps a small autism cares grant for victims of the tornado or another natural disaster.

If you would still like to give, donations are still being accepted through December.
Our Fundraising site is : www.walknowforautismspeaks.org/swmissouri/taraholcomb

Thank you so much for all your prayers for Zion and for supporting us every year in this endeavor.

This is why we walk!

The first part of this video is when Zion was four and a half. He was just starting to speak, but his receptive language (understanding of our speech to him) was very low. He was diagnosed at age two and a half, so he had already had two years of aggressive therapy when this video was taken.

The second part of the video is him today.  Today he is working at age level school work, with a little help in special education. He has friends and social connections. He is always willing to try new experiences, such as: rock climbing, camping, water slides, travelling, and roller coasters. He even conquered a long fear of animatronics (mechanical people) when he rode an inside roller coaster at Silver Dollar City this past week. He is able to try new foods and always expresses himself fully now. He has a great sense of humor and he always cracks us up. We are expecting amazing things from him as he grows up, because he is an amazing kid!

Please support our team, Zion's Tribe
Walk Now for Autism Speaks
September 10th, 2011
Jordan Valley Park, Springfield, Missouri
Registration Starts at 9am
Walk Begins at 10am

Press this link to take you to the Autism Speaks Fundraising Site to join our team and to donate-
Zion's Tribe Fundraising Site

Thank you so much,
Jason and Tara

Walk Now for Autism Speaks: September 10th, 2011

Dear Friends and Family,

This year I am going to start my family letter with a poem. It is about the expectations a parent has about raising a child and how those changed once she had a child with special needs. This poem always touches my heart and I hope it will do the same for you.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, The Michelangelo David, The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

By Emily Perl Kingsley

Our Family has been crazy busy this year. We have continued to raise awareness and knowledge about autism in our local area and nationally. Jason is the co-chair of the Walk Now for Autism and we have tried to be active in the autism community. We have participated in the Faces of Autism Photo Project, which was even recognized at the National Autism Speaks Conference in May of 2010. We also have raised local awareness by our Light It Up Blue Campaign. This year Zion’s school got involved. They lit the school blue and set the week aside for autism awareness that included Jason and I reading in the classes about being a friend to someone with autism. We have been so blessed to have a school and principal so willing to educate the kids and parents about autism.

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. We are dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism; to raising public awareness about autism and its effects on individuals, families and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks. It’s time to listen

If you would like to support our Walk Team on September 10th, 2011 please consider giving on our walk page. The money raised goes to family grants, research, awareness and services for families who are affected by autism.

Here are the links:
http://www.walknowforautismspeaks.org/swmissouri/taraholcomb or you can go to www.zionstribe.com and press on the link to our fundraising page. You can also join our team and raise money. You can walk with us or be a virtual walker and still raise money. If you raise $150 (by making a page yourself) we will give you a Zion’s Tribe T-shirt.

Thank you so much for your love and support through the years. We are so blessed.

Tara, Jason, Hannah, Zion and Caleb Holcomb


Photos from Faces of Autism and Light it Up Blue:

Mother of child with autism says understanding condition is key to coping with it

Mother of child with autism says understanding condition is key to coping with it

Here is the story Ashley Reynold's did about our family. Really well done. I am so impressed with her and really proud of my kids!

Hot Dog Palace

Ozark South Elementary Hot Dog Palace is today. Where the 2nd grade class makes the gym into a huge restaurant. Zion is the drink man. He has been memorizing the five drinks that he will offer, for a week. Jason and I of course, have been trying to get different reactions and have asked him if he was going to serve everything from grape soda to liquid metal. It is always something that isn't on his list. He looks at us like we are crazy. I then tell him how to respond.

This morning, Jason said he was going to order a root beer, and Zion rolled his eyes and said, "Sorry Sir, that is not an option!" He finally got that we were joking and it was a marvelous moment. He got the joke and responded appropriately. It was awesome.

We will probably just order what is on the list. Diet Coke, Coke, Sprite, Dr. Pepper or Water (I even know the options).

Light It Up Blue

Let's light up our community and raise awareness about autism. Please change out your white light bulb on the front of your house with a blue light bulb. You can get them at Home Depot or you can find them at another home center. Thanks!

Zion: He lives up to his name.

Zion. Zion. Zion.

When we chose to name our son Zion we thought that people would probably think that we named him after the cherished underground city in the Matrix movies.  Few would think of the hill near Jerusalem.  At one time, there was a Jebusite fortress that stood on that hill: A fortress on a hill. The fortress was eventually conquered by King David and named the City of David. The part of the city where the fortress used to stand was called Zion.

When Zion was first diagnosed with autism there was no other better term for him than a fortress. We were all standing outside trying as hard as we could to break down the outer walls so that we could see what the city on the hill had within. Maybe there would be treasures’ and bounties or maybe there would be stillness and solitude. We had no idea what lay within. Jason and I were hoping for bounties galore!

When he was three years old we started a rigorous therapy program. It included all the therapies he got in school (Speech, Occupational, and Physical Therapy), but also Floortime therapy everyday from either a developmental therapist or mom and Applied Behavior Therapy four nights a week by certified therapists. We were trying to break down the walls and see what was inside.

To be honest, after what the neurologist expressed to us (that he would spend his life in assisted care), I wasn’t as hopeful as everyone who surrounded us. Thank God for friends and family! The truth was--they didn’t know Zion like I knew Zion. They never saw him at stores or tried to talk to him in depth. They never saw the meltdowns. They didn't know what we went through on a day to day basis. They only saw him when he was in my arms or at church when he could do whatever he wanted; which consisted of sitting in a corner and just watching the world pass him by. I am glad they didn’t see him everyday, because then they might have lost a little bit of hope too.  Don’t get me wrong. I never lost complete hope, I just felt like I was doing all this work for a goal that was so far in the future –it was hard to imagine.

Another name for Zion, the city on the hill in Jerusalem, is the Promised Land. I can’t say that we are definitely in the Promised Land with Zion, but we sure are getting close. He is behaving like a neuro-typical kid on so many levels it is miraculous. He is participating in social programs with enthusiasm and loves being an active part of our family. His play is at age level and his schoolwork is astounding. He is the most empathetic child and loves his sister and brother with vigor. 

I have moms come up to me asking for advice. They ask me what we did that got Zion to the place he is today.  Most do not believe that Zion was that severe. They don’t let themselves be that hopeful (I was the same way!) But I have witnesses!!! Zion used to be a boy who was scared. He couldn’t communicate. He couldn’t express his feelings. He could not play. He could not control his behavior (still working on this). He could not open his gates and let people see what was inside. He lived within the fortress and peeked out every now and then to make sure we were still there.

My answer to these moms is- I have no idea what the special formula was or why he responded so well while other children we know do not respond. I don’t know what the key was.  But I do know that Zion, the hill in Jerusalem, was also the place where the king lived. It is also the place where our king lives today. He lives in my little boy’s heart and has been the constant companion in the dreary days since Zion’s diagnosis.

From that day the neurologist told me he had autism and would never be "normal" (in so many words),  I prayed over Zion, I prayed for healing and wholeness.  Today I can contribute his wholeness to many different things, but mostly I give the glory to God. 

Zion is a miracle among us.  His body was a fortress. We stood outside the walls and begged to be let in and when we finally were allowed to see what was inside, we found riches and jewels galore. More than we could have ever imagined!

Sw Missouri Autism Speaks Wrap-up 2010 - Large.m4v

This is our 2011 Wrap Up Video. All our accomplishments from this past year summarized. Thanks so much to the Autism Speaks Volunteers, Matt and Heidi Giles, and all the walkers and sponsors for our events.

A young son who has Asperger's Syndrome interviewing his mom.

I just love this so much. Enjoy.
From StoryCorps

Autistic Kids: The Sibling Problem

This is from the Time Magazine article Autistic Kids: The Sibling Problem
As you all know I have a lot of concerns regarding my daughter who feels jealous and isolated at times in regard to having an autistic brother. Even though my son is doing exceptional and almost to the point of having his diagnose removed-she still has these feelings that started when my son was younger and times were harder. Anyway, here is an article that sorta sums up how she deals with things and the type of person I think she will grow up to be and in some cases what kind of person she is now. 

A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and "typical." And I'm the parent — most of the time. Before we got to the store, Joey said to me, "If Nate has a tantrum, I can handle him. You just focus on buying shoes. I'm better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense."

None taken. He's absolutely right.

The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings. (See six tips for traveling with an autistic child.)

As their parents, there's a lot we can do to help. For starters, we can educate them early on, by explaining their sibling's disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn't have to be "thought of as being geared only to the involved child," Melmed says. In his office, Melmed reassures siblings that "other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common." He also instructs parents to reaffirm that message at home. "Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal," he says.

A great way for kids to feel "normal" is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. "The workshops give these kids the opportunity to realize they're not alone," Snyder-Vogel says. "[We play] a lot of games that help them interact and problem-solve with peers. Kids don't even realize they're getting support."

At a recent Sibfun workshop at the Jewish Community Center on Manhattan's Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.

Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. "These siblings have seen what it's like to have a hard time in life," says Sandra Harris, executive director of Rutgers University's Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).

There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.

Read more: http://www.time.com/time/health/article/0,8599,1698128,00.html#ixzz1DZY3YvFv

2010 SW Missouri Walk Now for Autism Speaks Year in Review

Take a look at all we have accomplished this year. With all the volunteers, teams and corporate sponsors. Thank you so much!

Faces of Autism at St. John's Hospital

So excited to tell you all that the Faces of Autism Photo Project will be displayed in the main lobby of St. John's Hospital January 15th through February 15th. This is an amazing opportunity to raise awareness of this disorder and the lives that it affects. Please come by and support us and our community.


St. John's Main Lobby
1235 E, Cherekee
Springfield, Mo.
Jan. 15th - Feb. 15th

An Amazing year!

The totals are in and boy, are we just absolutely blown away. Our walk was our largest to date. We welcomed over 1,000 walkers (about 600 last year) and have raised over $80,000 ($60,000 last year) with donations still coming in through Dec. 31. We are absolutely amazed at our community. Thank you so much for everyones work and support. I will post Zion's Tribe totals once I know, but I think this year we will be close to $4000!

 

September 11th- Walk Now for Autism Speaks/ Southwest Missouri

Last week I took Zion for his yearly doctor’s appointment. Can you believe it has been a year since he went to the doctor? He has been totally healthy all year long…a very new experience for us compared to the years with so many health problems. Anyway, our pediatrician was so impressed with the progress he has made. She really believes that we have recovered Zion from the world of autism. The years of work have paid off!!!

Zion is a testament to early intervention. He was two years old when he was first diagnosed. He was totally non-verbal and scared of his own shadow. He is now seven and has had almost five years of therapy. He is attending second grade this next year in a neuro-typical classroom; reading on target and writing with perfect handwriting. He is gifted in math and seems to have the mindset for concrete subjects. He spends less than an hour a day in special education.

He is becoming more and more “normal”. However, as he gets older and becomes more independent his autism shows in different ways. He is becoming bit more rigid in his routine. We have to tell him in advance what the plan is or he gets upset. He does not understand past or future and has trouble with positional words. He also is having quite a few behavior problems. He gets frustrated and hits or punches. It is very difficult for him to make friends because he is way behind his peers in regards to social skills. This is my greatest concern for him. I pray that he continues to make progress in this area.

Accomplishments this year include:
Learning How to Ride his bike
• He became a wolf cub-scout.
• Went on 2 day camp-out with Jason and did not have to come home early.
• He played in a special needs softball league.
• He threw out the first pitch at the Springfield Cardinals Autism Speaks day.
• July 23rd-29th, he will attend Camp Barnabas; a special needs camp, with Hannah.
• He is taking part in our community awareness campaign called the Faces of Autism, a traveling photo exhibit of those affected with autism and their stories.

Jason and I just recently attended the Autism Speaks National Walk Conference in Virginia. We were fortunate enough to meet the people in charge, including the Chief Science Officer, Geri Dawson. We heard about all the new research that is taking place around the world, all made possible with the walk money we raise, THE MONEY YOU SEND! Some of this research is on the cusp of major breakthroughs. Just think about a world, in the future, without the negative effects of autism: A world where our kids are not lost in their own minds and able to talk and communicate with their parents and siblings.

Please consider helping us raise our goal of $3000 for team Zion’s Tribe: Walk Now for Autism Speaks 2010.
Two ways to help:
Donate to Jason or me as individual walkers:
http://www.walknowforautismspeaks.org/swmissouri/taraholcomb
http://www.walknowforautismspeaks.org/swmissouri/jasonholcomb
Or log on to Face book and Follow the Puzzle link on my Page

Or Join the Team:
• Join and get a free Autism Speaks Silicone bracelet.
• Raise $100 and get a Zion’s Tribe T-Shirt
• Each $25 after that you get entered into a drawing for a $100 gift card (Target, Sears, or Home Depot)

We want to thank you in advance for all the support you all have shown us over the last five years. We want to make a difference in the lives of others with autism and we can do that with your help.

Sincerely, Tara, Jason, Hannah, Zion and Caleb


Where your Money Goes:
Research, Advocacy, Awareness, and Community Services
As of March 2009

Research: Autism Speaks has committed over $98 million in grants to support 773 promising research projects and fellowships into the causes and treatments of autism. The investment in these research grants alone has been leveraged into nearly $153 million in NIH and other funding.

Advocacy: Missouri is one of 21 states who have identified State Insurance Reform as a priority this legislative session. In March, 2009 Senate Bill 167 and House Bill 357/198 UNANIMOUSLY passed out of their committees. Federal Advocacy is also a priority of Autism Speaks and our families, as they reach out to their federal senators and representatives to foster support of the ABLE Accounts Act of 2009. Autism Speaks will continue to support the effects of the Combating Autism Act and Expanding the Promise for Individuals with Autism Act to ensure federal dollars are appropriated for autism research and services for families.

Awareness:
• As a result of the award-winning Autism Speaks “Odds” campaign in partnership with the Ad Council, there has been a 43 percentage point increase in public awareness of ASDs.
• In December 2007, the United Nations declared April 2nd World Autism Awareness Day.
• In Missouri, Autism Speaks volunteers and staff organize a number of Autism Awareness Days

Community/Family Services: These grants help community organizations expand existing programs to serve more individuals with autism, and create new programs that demonstrate true innovation in providing services in one of the following areas of need: Education, Recreation/Community Activities, Equipment/Supportive Technology or Young Adult/Adult Services.

ADDITIONAL FAMILY RESOURCES
• 100-Day Kit for Newly Diagnosed Families – this free kit provides helpful, personalized information which includes local resources, support groups, where and how to find services, local conferences and recreational activities (also available in Spanish).
• School Community Toolkit – available online to assist members of the school community in understanding and supporting students with autism.
• Dental Tool Kit: Autism Speaks has teamed up with Colgate and Philips-Sonicare to create a dental guide and video to provide tips for improving oral hygiene at home, as well as information about how parents and dental professionals can make a visit to the dentist's office less stressful and more productive.
• Aspergers and High Functioning Autism Tool Kit: were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child's diagnosis of autism or AS/HFA.
• Family Services Resource Guide – lists over 650 Florida resources and more nationwide. This extensive, searchable online database brings resources to families, like early intervention to adult services, and is searchable by zip code.
• Autism Response Team (ART) – the ART team is comprised of full-time, paid employees who are also parents of children with autism. The ART specialists are experienced and trained to respond to a variety of questions and concerns from families affected by autism. Call 1-800-AUTISM2 to speak with an ART representative.

Zion and Louie the cardinal.

Faces of Autism Photo Exhibit

Faces of Autism Photo Exhibit at the Mud House in August

Faces of Autism photo exhibit will be at the Mud House the whole month of August. 

The Mud House is located at: 323 South Avenue, Springfield, Mo.

Check out their menu here:

www.mudhousecoffee.com/

Sibling Jealousy

For the past two years, my daughter has become more and more jealous of her brother and the autism work that we are involved in. She cries and frets about her brother getting special attention because he has autism. It has gotten to the point where we can not even mention autism in our home without her making a face and saying, "It's always about autism MOM!".

At first I thought it was just her being a little girl and eight year old hormones. But I am not sure anymore. Jason and I are involved heavily in the autism community and the Walk Now for Autism Speaks, but we always balance that out with piano lessons and Girl Scout events. We try so hard not to make her feel less or less cared for. Sometimes I think we over compensate (new puppy). I really believe that we have done a good job about giving everyone equal attention and opportunities. But still she feels this way.  Is it just perception or is there something that I am not seeing?

She is a great sister to her brothers. And when she is in her "right" mind she cares deeply about kids with autism and her brother. But when she is upset or sensitive she lashes out at Zion and tells him that autism is bad. Which then makes Zion come to me and ask questions about his autism. He asked me yesterday if he had a brain. (tear)

She usually doesn't complain about objects or things he gets, she actually complains about me feeling more for him.  Not loving him more or caring about him more, but that I cry for him and for other kids with autism more and she wants me to cry for her. I wish it was something I could change easily, but since I seem to overflow with tears when one of "our" kids in the community accomplishes some little or great goal, I don't think this is going to change. I am actually happy I don't have to cry over Hannah in this way. She is amazing. She can accomplish anything she sets her mind to with little or no trouble. 

She will be attending a sibling support group soon and I also may get her some individual therapy. She also will be leaving for Camp Barnabas this week. I am praying that she makes friends with other girls that have brothers who have autism. I pray that she expresses her feelings to them and maybe they can understand her on a level I can't. I only know what it is like to be a mom of a child with autism. The worry, the fear, the hope, the triumph....but I feel that with all my kids. 

Her words everyday,"I wish Zion didn't have autism." That is my wish too, but life has already dealt those cards for us. My wish is that all my kids feel equally loved and cherished, and I seem to failing at it. I guess we just need to work harder.

Walk Now for Autism Speaks Kick-Off Saturday, July 10th

Walk Now for Autism Speaks is holding their kick-off event Saturday, July 10th from 10am-1pm at Burrell Health, 1300 Bradford Parkway, Springfield, Mo. We are having a totally different kind of kick-off. It will be resource friendly, where you can register a team or individual walker right there online or tour the booths to get tons of information about the Walk Now for Autism Speaks, that will be happening September 11th at Jordan Valley Park.

Booths included are: Faces of Autism Photo Project, new team tables, seasoned team tables with their ideas, Autism Speaks science table, fund-raiser idea tables, tribute trail table and team mentor-ship table. We also will be having an autism expert panel discussion, where you as moms or dads can come and ask questions, to six different professionals, regarding their different fields of therapy. There will also be a movie room for the kids. Incentives to come. Lunch will be served after the panel discussion.

Please come and bring your team.
RSVP: springfield@autismspeaks.org

Shoot Out for Autism

What a great family who raise a lot of money for Autism Speaks every year through their Shoot Out for Autism. They are good friends of ours and we would appreciate it so much if you give them a call and reserve your spot, for their sporting clay shoot or pistol shoot. Be a part of finding a cure or cause for autism.

May 29th, Sporting Clay
July 31st, Pistol Contest

Faces of Autism Exhibit Opening: Friday, May 7th

Faces of Autism Exhibit Opening
Friday, May 7th 6-10PM
Freedom Photography
400 West Commercial Street
Springfield, Mo. 65803

Photo exhibit and digital media presentation featuring families from Southwest Missouri affected by autism. This event is to raise awareness and support for the Southwest Missouri Walk Now for Autism Speaks which is taking place September 11th, 2010 at Jordan Valley Park, Downtown Springfield, Missouri.

This is a free and open to the public event. Please come and celebrate our kids and make a difference in raising awareness about autism.
Refreshments will be served.

NBC's Parenthood is having a Walk Now for Autism Speaks Event

The Braverman's are attending an Autism Speaks Walk in mid-May!  This is an exciting post because I am a huge fan of Parenthood, the new NBC series that has a storyline that involves a child on the autism spectrum. One of the families has just found out that their child, Max, has Asperger Syndrome. This is a form of autism that is considered higher functioning, but still has significant symptoms that can be debilitating for a family. Persons with asperger syndrome may have symptoms that include:  rigid schedules, sensory issues, complulsive behavior  and having difficulty relating socially with others.

As you know, Jason and I are very involved with Autism Speaks and the Walk Now for Autism Speaks that is held every September  here in Springfield. Jason is actually the co-chair for the Southwest Missouri Walk this year. Lots of work to set these sort of events up. So this sorta doubles our life right now. These walk events are a source of support for the thousands of families who have a child on the spectrum, and they raise valuable funds for research and community grants.  If you have never been to one of "our" events you will be able to get the feel of it on screen and then in September when I ask you for support you will be reminded to support us in our goal. :)

Please take a minute to read the Autism Speaks Blog about the event and tune in to watch! It says it will air in mid-may.

http://blog.autismspeaks.org/2010/04/18/bell-parenthood/

April 17th: Autism Awareness Day @ the Springfield Cardinals

Autism Awareness Day with the Springfield Cardinals is this Saturday, April 17th. We have sold all of our own tickets, but I am sure you can still get tickets through the box office. We are pretty sure that Zion will get to throw out the first pitch (our team sold the most tickets). I have been prepping him for it, we will see how he cooperates.

During the pre-game show there will be a short slide show of some of the Faces of Autism Project and statistics on how autism now affects 1 in 110 children. There will also be hundreds of families of loved ones who have autism. It is our time to get together and support Autism Speaks, but also support each other. Plus, it is FUN!

Shoot Out for Autism

One of the most successful fundraisers in our Autism Speaks Community in Southwest Missouri is the Shoot Out for Autism. Michael and Heather Woodring continue to make this an event that is successful and fun for all those who attend. They are an inspiration to all us other parents with children on the spectrum. When our son was diagnosed we were introduced to them through a mutual friend. Heather helped Jason and I get on the right path with therapy and even introduced us to Zion's "worker" he has today. We really appreciate them and their dedication to raise funds and hope to find a cure for autism.

If you are interested in shooting sporting clays or want to participate in the pistol shoot (new this year) take a look at their page and give them a call.

www.shootoutforautism.com

Tales from the Spectrum

Just recently I got a hold of an album with music devoted exclusively to having a child on the autism spectrum. With song titles like: My Biggest Hero, Stimming and Life on the Spectrum you can not escape the truth and love behind these songs.

I know the heart of these people and hope that their passion in life (their music) helps them and everyone else who listens to it, be able to find the wonder and awe of having a child on the spectrum. God helps us through all the terrible times, by giving us gifts of first words and eye contact, and friendship and camaraderie with others who are going through the same thing. I definitely found that listening to this CD.

The Neotypicals from Branson, Missouri are hoping to raise awareness and promote research and rescue for those affected with autism. I suggest that you take a listen and support their cause at www.theneotypicals.com

Faces of Autism Photo Project

An introduction to Faces of Autism, a photo project for raising autism awareness and promoting the 2010 Southwest Missouri Walk Now for Autism Speaks. The photo exhibit will be used throughout 2010 for First Friday Art Walks and other events. Contact us if you are interested in participating.

This video reminded me of Zion and how perfect he is.

My friends Dan and Judy sent me this link... and it makes me think of Zion. Sometimes we pressure the ones we love, wanting him or her to be something impossible. I believe in the impossible, but sometimes there is a point where you let them be just who they are. And in that, they are the best.

Halloween

This Halloween was a pretty big step up for Zion. The past few years he hasn't really understood the dressing up and going out asking for candy. Most of the houses that we went to last year I had to tell the people inside that he had autism and that is why he just walked right into their house and sat down or why he didn't come within ten feet of the inflatable casket with smoke pouring out. This year he was the one leading the gang. First of all he started getting ready for Halloween October 1st. He has looked forward with much anticipation to the school party, trick or treating and "the pumpkin patch."

Halloween night we dressed him up in the little Air Force pilot's outfit (embroidered with his name) from his aunt Jessica and bought a Speed Racer helmet at Walmart. He hated that the helmet kept yelling speed racer noises in his ear, but we told him he would get more candy if he kept it on. He got in to the swing of things and didn't seem scared of the inflated skeletons or huge clown giving out candy. The only thing that seemed to faze him at all was when he came around a car in the drive way and saw the homeowner dressed up as a zombie, sitting in a chair ready to scare whomever came to his door. I don't think he got candy from that house, he ran too fast. But on the other hand, every child ran. It wasn't just the child with autism.

I am just so proud of him. He conquered a lot of fears this past weekend. He realized that the sounds, smells, and smoke and illusions are all just part of the holiday. There are actually people behind those masks and they are just wanting candy too! We are all out there for one thing. And I think we have found the reward for Zion for all those fears conquered. Candy!