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!