Friday, July 25, 2008

Alex's Autism Video

(Scroll to bottom of page for the video).

Alex is our 13 year old autistic son. He is high functioning. He has attended his neighborhood school with the help of a part-time aide. He has progressed tremendously over the years with the help of speech therapy, occupational therapy, social skills training, and other interventions.

He still struggles immensely with social skills, despite all the hours spent training him to engage in appropriate social behavior. As Alex has moved into his teenaged years, the social aspect of his disability has become a severe handicap, as he desperately wants to have friends, but does not know how to go about getting them (and then keep them). His interest in girls has also increased, creating some interesting and awkward situations.

A few months ago, a good friend of mine had the courage to call me and relay some information to me. She had witnessed Alex in some awkward and sometimes inappropriate situations involving his peers. She wanted to know what she could do in those situations to make them more comfortable for all involved. For the next hour we brainstormed what we could do to make Alex's interaction with others more positive for everyone. We discovered that even though many of the boys and girls in the neighborhood have grown up with Alex, they did not know he was autistic. They just thought he was "weird".

We decided it would be beneficial to gather all these kids together in one place to teach them a little about autism and Alex. A date was set and Mark (my husband) and I spent hours discussing what information was important to share and then putting it all together in a way that wouldn't bore these teenagers to tears. In an effort to get more of them to come, we arranged to have the presentation take place at the local pizza joint. We reserved the back room and asked for 50 chairs.

When the night finally arrived, Mark and I went down to the restaurant and set up. We got the entire room arranged and then looked at each other and wondered out loud if anyone was actually going to come. There was a big NBA playoff game that night that our local team was playing in, it was the end of the school year and the kids were restless, and quite frankly, they all had better things to do than come down and listen to us talk about autism.

By the time we started our presentation, it was standing room only. The support from our neighborhood was astounding. They came, they ate, and they listened...intently. They asked questions and they paid attention. Several of them found me after the presentation was over to ask specific questions about Alex's behavior and to find out what they could do in those situations. It is a great tribute to the kids in our neighborhood and to their parents that such profound respect was shown that night.

The first part of the presentation was mostly informational, with several funny stories thrown in for effect. At the end of the PowerPoint presentation, we showed the kids a short video. It is a video of Alex that highlights some facts associated with autism and then emphasizes that he's a kid like everyone else who just wants to have friends. It was our hope, that after the facts were covered, that we could touch their hearts and their souls, and move them to action. We hoped to motivate them to look past the differences that are obvious and look for the similarities, which are there, but take some effort to find.

We think it was a success, as we have watched Alex's peers interact with him in a more positive manner. They took the information given them and they applied it. Alex's interactions continue to improve with the coaching and instruction that he is receiving from his peers. Right now, this is the best therapy money can buy. Having his own peers, people he looks up to and respects, teaching him proper social behavior is invaluable. For this, we will always be grateful to the youth in the neighborhood who have adjusted to accommodate someone who is a little different from them. We have all discovered that a little understanding goes a very, very long way.

Since the first night that we gave this presentation, we have had the wonderful opportunity of being invited to present it again and again to various classes at the local high school (thank-you to the extraordinary Community of Caring teachers). We hope to go back again in the fall, as it is a great thing to see tolerance, understanding, and compassion grow in a community. We have watched many kids (and adults) rise to the occasion and take Alex by the hand and show him the way. A million "thank-you's" would not be enough to express our gratitude. To those in our neighborhood, and especially to our family members, we express our sincere appreciation for just being who you are and loving without judging.

The video is attached. A very special thanks to Brady Dunn for working with us to create this video; he dedicated a lot of time to producing and editing this video until it was perfect. If you like the song that accompanies the video, it is by the band Five for Fighting. They wrote the song specifically for the autism cause. Each time it is downloaded, the band donates the money to an autism charity.


40 comments:

jill said...

Thank you for sharing, I love it.
Jill H.

Andrea said...
This comment has been removed by the author.
Andrea said...

Crying again...

Sandie said...

Not just crying, balling. I love this! Sending so much love your way. Thank you for sharing this with us.

Andrew and Lori said...

You guys have done such an amazing job with Alex. As a parent you want your child to have everything, I am so greatful that the presentation was so well accepted.
We love you
The Miller Family

Hunsaker Family said...

I started crying the minute I opened your blog. By the time I viewed the video clip I was bawling. Thank you for your inspiring words and for sharing. We love you- Tara

swensen squeeze said...

Ok - that was awesome! If you do this presentation again, will you please let me know. Thanks for sharing! You guys are the best! That was truly touching.

jill said...

Your mom asked me to show 'Uncle Dave'. I sat him down and left hiim alone to read and view your wonderful video. He caome out of the computer room wiping his eyes and beaming with pride at the talent and caring of 'his family'. Your words and video show the love and challenges faced by many. Thanks for reminding everyone.
Love, Jill H for Uncle Dave

Chris and Susan Neff Family said...

Kris,
I think you can sum up the Jones cousins as 'cryers'. That is what we do, as well as absolutely love and support you and your family.

Leigh said...

Wow...what a powerful message. I don't think anyone with a heart can help but cry and instantly love your little boy. Thank so much for sharing this.

Julie said...

Thanks Mark and Kris...Joe forwarded your video and it was wonderful. We had a discussion about one of children possibly being a HFA (Apsbergers) a couple of months ago. She was found to still not meet all the requirements. Conversation switched to how ADD/CFIDS may overlap in her case. I would like to share your video with a mom in our ward with an autistic son. Thanks again. Beautifully done.

anonymous said...

Thanks for sharing the video and blog. It’s very touching to see the voyage that Alex and your family has been through. The adolescent stage can be tough for most kids but especially so for kids with autism. So far our son is doing pretty well, but he’s kind of sheltered by attending a special school. The year after next will be very telling when he goes to 9th grade in a regular Jr. High school.

All his life he has kept us entertained with the stuff he says. Lately, whenever someone says, “Hi, how ya doing?” he’ll say, “Normal.” What he means is, his day is typical, nothing special going on. I have always viewed him as a special gift to our family. But for his sake I wish he could just be a normal kid and have fun doing the normal things that kids do. Sometimes he does fit in well and gets along great with other kids. It’s so great to see him being a regular kid. But then there are the other times. I used to wonder and worry a lot about him and what the future holds for him. But I’ve learned with him and with other handicapped children in my extended family that things tend to work out for them, somehow.

Thanks again for sharing, and best wishes for Alex and all of your family in the future. Just keep doing your best and I know things will work out.

anonymous said...

I’m amazed at how big Alex has gotten! I remember as clear as day going to his blessing and feeling so removed from the experience of motherhood. (HAH!) It was fun to see Alex’s pictures as he has grown. I don’t know what life is like for you on a daily basis but the humor in which you always approach things is perfect. And hearing about your success with the neighborhood kids speaks volumes about them, as you said. Thanks for sharing more about Alex and the great experience you had. -- Jody M.

Shy Little Violets said...

Amy Swenson directed her readers to your site and I just want to tell you how handsome I think your son is. They are special little spirits that are sent to us for a reason. My sister has a son with Autism and he tries her patience every day but it is only to stretch her as a person and enhance her own spirit. What great people you must be for God to have entrusted you with this special guy, he must really trust that you'll do the best you can for ALL your kids. Thanks for sharing such a touching look from another perspective. HIS perspective.

morgan and ashley boyack said...

Alex,
Thank you for sharing your feelings with our family. Your life is so incredible. You have a lot to teach us. I hope you give your Mom and Dad a huge hug. They have blessed you because they have treasured who you are and are helping you be what your Heavenly Father wants you to become. I hope you know how much we love you! You are one of our favorite young men. Morgan always gets excited to come to the Pingree's because he gets to see you. Hope to see you when we come to SALT LAKE next week!
Love the Boyack family

Kim Goddard said...

Mark and Kris! I got your blog info from Amy Swensen. Such an amazing post! Alex is a special guy and he is lucky to have you two for parents and to be part of such an amazing family. Thanks for sharing. Also, Kris I still have those pictures of you with your kids in Moab from a few years ago that I need to send to you. I need you email. Call me.

anonymous said...

Thank you so much for forwarding this link for your blog to me. My entire family ended up around the computer screen with tears rolling down our faces. We were so deeply touched by what you shared and by the message that you communicated.
-- K.P.

Ginny said...

Tears here, too. Dave forwarded this my way too. Thanks for sharing! You guys really are amazing! Keep up the good work. (and thanks for the ds's :-))

EMPTY NESTERS said...

What else can I add Kris? It has all been said. I am so impressed with the way you and Mark are able to work with our special guy, Alex. I have to add Jill and Wes also. You have both been an incredible example to us. I have sent your post on to my Primary counselors. They will enjoy this too. Love to you all. Aunt Laurie and Uncle Lee.

Lindsay said...

Beautiful, HE is beautiful. Thank you...

Susan said...

A friend at work forwarded this to me this morning. I am deeply touched and encouraged by your story. Our 3 kids (2 boys-5&7, 1 girl-6) all have varying degrees of autism, and we too wonder what their future and ours will hold.

Our oldest will become a Cub Scout in a few weeks, something he has longed for by sleeping with his Wolf book under his pillow for months. I can see that he wants friends besides his siblings, but cannot figure out how to do it. I haven't had any good ideas (until now) for how to help the neighborhood boys know why he is different from them and yet so similar. Thanks for the inspiration.

Susan S.

crazyoldladynelson said...

My son is 5 and has autism and we are just started some of things you have already mastered. Thanx so much for sharing you story. I'm sobbing like a baby.
Sincerly Sarah Nelson

Mary Gardner said...

Meet my grandson, Alex and his wonderful parents who are tireless in their efforts to make sure Alex has as normal and happy life as he can. They have never faltered or given up in making sure he has the appropriate services and education available. Alex has taught us all more about compassion and love than anyone could; he makes us laugh, he makes us cry. Kris and Mark were very young parents when Alex was born, and to have watched them through the years taking each challenge one day at a time makes me very, very proud of them. And to each and every one of our other children and their spouses who take Alex under their wing and protect and love him through his life, I am very proud of them also. And to Alex, who "doesn't do chatting", I love you. Love, Mom

anonymous said...

As we have experienced the pangs of having a child who grows up with a 'disability' but with definite gifts and the same desire for friends, we experienced a huge emotional reaction to this VERY effective way of reaching out and pulling in and educating the people who know and love Alex. Our response to the blog and video is instant and very emotional. It is EXCELLENT! -- J. Nelson

anonymous said...

Thank you so much for sending this beautiful and well written presentation on Alex and Autism. Some of those pictures remind us when we were neighbors, you guys were the best neighbors ever. We sure miss all of you. I have a neighbor who's son has autism and I would love to pass this on to their family. I will keep Alex and your family in our prayers, and you Kris to keep the strength and passion in your heart. We have friends that have a daughter with XP and it's difficult for her as well with friends especially as she is getting older. I just know that you and your family must be growing leaps and bounds on this journey of life and will and have been blessed along it. Give my love to your family and hugs and kisses to the kids. Keep in touch and posted with how Alex is doing and be sure to include his first girlfriend sometime in the future. -- L. Harm

Tanya Parker Mills said...

A close friend of the family who teaches your son sent us the link to your blog. What a wonderful video. We did a similar thing for our Aspie son, Jason, though at an earlier age and with only a powerpoint presentation. I was able to give it to his 5th grade classmates (in line with their study of the human brain) and it really made a difference in how his peers treated him at school. Now he's almost 15 and starting high school in less than a month. Fortunately, although we moved away from his original group of friends, he's made even more friends here, and particularly in the Church. I'm going to be sure and post a link to your blog from mine. We hope Alex continues to make lots of friends.

Hays Family Blog said...

Alex
Thanks for being such an amazing young man. We all learn so much just by being around you. We love you!
The Hays Family

anonymous said...

Thanks Kris! I didn't plan on crying at work today but this is just awesome. Alex is such an amazing young man. I don't know that I have ever been around him and not felt loved. Even though he has his social challenges, he certainly understands love. For those of us that know him, we are blessed. I love bumping into Alex at church and on Tuesday nights from time to time. I hope he likes me as much in the next life as he does in this one. Thanks again. JOSH

Rob-ness said...

Hi Kris and Mark, I found a link to your blog on Jill and Josh Hays blog. What an inspiring story, it's great how the community comes together for a great cause. My cousin Jessica has autism and she is such a blessing to our family as I'm sure Alex is to yours. Thanks for sharing your story.

Your friend and neighbor, Rob Adams

Abby Runyan said...

Natalie Fredrick gave me the link for your blog and I just wanted to say thankfyou for sharing your sweet story and for educating other about autism. Living with a son with autism is hard but for me the hardest part is not knowing what the future holds. Thanks again for your sharing.

-Also while I was watching the video my son with autism came in and wanted to watch the video over and over again. He doesn't have any words so I didn't know what he was thinking but I think he felt the love from the video. Thanks again.

Donna Cooper said...

I have an 8 year old son with HFA and you have inspired me. Most of his teachers and administrators at school have advised me not to share/tell the Jonathan's classmates that he has autism. But they know he is "different" and I think explaining would be the first step to acceptance. I will show your video/blog to his teacher and it will be the catylist for discussion.
You are amazing, and so is your son. Thanks so much for sharing!

Donna
www.HisGraceAmazesMe.
blogspot.com

Unknown said...

Thanks you for your blog..it was past along to me by a friend..Both of our sons have autism. It has inspired both of us in helping our son to achieve even more for our boys..

Thanks again,
Andi

April said...

This world of children is a place of wonder. My family has 3 children with the diagnosis, and I teach children with ASD at Spectrum Academy. The friendships that they so crave are possible...others just need patience. Empowerment, courage, love, and the Lord are the strength that allows us to enjoy the meek of the earth for they truly shall inherit it. Thank you for helping so many. April Flitton

Cathy said...

Mark & Kris - Mike Smith sent us your link. We are touched by your son's (family's) story & the strength you show in reaching out to your community! You're a great example to us! Our Kindergartner is epileptic and has some behavioral issues as well. Thank you for the ideas! Thanks for sharing.

Bryan & Cathy Holt bcholtfamily-outnumbered4to1.blogspot.com

Amy W. said...

Hi! I am friends of Cathy and Brian Holt, they directed me to your blog. My son has autism but is very high functioning. I often wonder what adolescence might bring. What a beautiful, wonderful experience to see your community respond in such a way. It touched my heart. You are brave and wonderful parents! Best of luck!

SummerV said...

I just viewed your blog and video and was so touched. More teens and young kids should learn about their peers that have autism. It would be so helpful on both sides. Such a neat video and story. He is so lucky to have you guys.
Summer Loosli Voorhies

Liz said...

You probably don't remember me...I was Liz Newman, but I was a few years younger than you and Mark. You guys game with our ward to San Diego way back when...I was friends with Anne Fredrickson. My mom got this link and sent it to me because of my 8 year old autistic boy. This video is so beautiful. We are about to do the same type of presentation to his 2nd grade class, and this is very helpful. Thanks for sharing your story. It's always great to see how other families live with this. My son adores D-land, too.

Alisha said...

I linked you through my friend Sara Rose.....My (almost) 6 year old son is also (not yet medically diagnosed) high functioning autistic....it has been a roller coaster since I started noticing his differences. I loved reading your post because I always feel alone and I always wonder what it will be like when Josh is older....so this was helpful. =)

Anonymous said...

Loved the video and your ideas on helping others learn to help your son. Our son is 11 and we are also working through autism together. I have been worried about how to handle things as we are getting closer to the teen years. Your approach is terrific!

Thanks

Macy said...

Wow there is a ton of comments on your blog!!! More than I have ever had on my blog. The most comments I have had on my blog is 7 not counting the comments I make!!! I live having an Autistic brother!!! He does not know, but he has taught me a lot!!!

Love Your Daughter,
Macy