Wednesday, March 4, 2009

The Day My Whole LIfe Changed

One year ago today, my whole life changed. One year ago today, I was in a place I never wanted to be nor ever expected to come my way. One year ago today, I didn’t know how to put one foot in front of the other. Today, I am ready to put it all out there.

One year ago today, our 16-year-old sweetheart of a daughter decided she didn’t want to live any more. She felt hopeless, alone, confused, distressed, and very anxious. How did we get there? I was standing in a hospital emergency room being rushed to the back because we knew the secret phrase of the day - “ our daughter is feeling suicidal”.

Our sweet Leslie, whom we had prayed for and waited and longed for for so many years, had always had challenges - more than should have understandably been hers. Adopted as an infant, our hopes and dreams for her future were bright, full of promise and love and holy things. As she began to toddle and interact and learn, we got glimpses of challenges that might be in her path. A handful of adults seemed to “get” her, finding pint-sized friends was challenging, and any invitations were few and far between. I was often frustrated myself, day-to-day, dealing with her “strong-willed” style and lost my temper more times than I’d like to ever admit. Primary and most church situations were often frustrating. Even as early as preschool, the pangs of rejection stabbed at my heart, as I knew in my soul that one day, she would feel that, too. I did all I could for many years to protect her from that. One day, and I don’t know when, the ability to do that ran short. The real world slapped her in the face. And on this day, it all slapped too hard and it was too much.

A couple of very intuitive teachers in elementary school noticed things here and there that troubled them in regards to her learning – difficulty counting things one to one, trouble with transitions, challenges with written directions, happy to play alone, hyper-focusing on certain subjects, trouble working in groups, crying easily, few friends, amazing memory and verbal skills which didn’t match work production. I noticed more – reversing letters and numbers, fascination with certain things that she wanted to take apart or tear up, always trouble transitioning, little eye contact.

Any testing at school always came back “normal”. She could do amazing things on tests when she was one on one with the tester. “OH, she is totally fine! She will be FINE”, they would say. I knew otherwise and began my own research.

We decided it was time for neuropsychological testing and forked out the big bucks to Kennedy Krieger, the “experts”. WOW – they are with Johns Hopkins – they will HAVE to be right!! At age 9, they diagnosed her with Ad/hd. “See how ANXIOUS she is? Bouncing around my office? Of course she has Ad/hd.” No, that was not the full answer. We had suspected Aspergers Syndrome, a neurobiological disorder “OH, no”, the experts said. “That is definitely not it. “

The idea of Aspergers, however, never left me completely.

They were wrong.

During Leslie’s THIRD hospitalization for suicide ideation last Spring (that’s one of the MANY psychological and therapeutic terms we are dripping with now) I woke up one morning and checked my email. I had subscribed to on online LDS magazine for quite some time, and honestly rarely read the stuff due to lack of time and sometimes lack of interest. On this morning, things changed. The home page had article, which is written by an adult LDS man with Aspergers and the challenges he faced growing up. I read it and after every sentence I knew in my heart, “THIS is Leslie’s life”. The Holy Spirit overwhelmed me and I just knew. I immediately went to the local library to find the books cited in the article – even in our little po-dunk town, those books were there. I read and read and put sticky notes on every page that had something that described my baby girl. There were at least 30 of them.

We knew. Now we had to find some experts who would know and then help us to know what to do next.

We found some great experts – they tested, they confirmed, they wrote the HUGE reports, and they helped. Now what? What we were doing to help her here, even now that we knew the facts, was not enough. Therapy and medications we were using were not helping. We were getting quite desperate searching for answers.

We asked many loved ones, relatives and “church family” to fast with us as we approached more serious decision-making. Through fasting, prayers offered by so many in our behalf, and by telling others close to us about our challenges, the Lord answered our prayers and led us to those who could help, and He led those with ideas and resources back to us.

The hardest thing we have ever done as parents was to leave our dearest “Bug” in Utah at the right place for her at the time. She needed to be at a location for further diagnosis, at a place that could keep her safe, and that would help us find the next step. The Lord guided us to the right one. He sustained us as we got on that plane and flew back home – without her. He then held our hands while searching once again to what was needed next – a small therapeutic boarding school for girls like her also located in Utah.

Leslie has been living away from home since May 5th of 2008. We have seen her many times, talk to her on the phone frequently, and she has been home for visits. She is now making amazing progress. She is having to work harder at things that most teenaged girls never dream of, even most adults. She is learning to understand her diagnosis and starting to understand and accept herself. We all have more work to do. Richard and I have had almost a year of “empty nesting” way too soon. We are nearly buried under more debt that we ever thought we would have. As parents we are learning all new ways to parent – in ways that will give her more of what she needs to grow into who Heavenly Father has plans for her to become. We know He walks with her and holds her hand as he has for us. We will make it as we are now able on most days to put one foot in front of the other, using baby steps, and some days even great big ones.

You can read about Aspergers Syndrome here.


  1. I get the honor of being the first to comment! I am so glad that you guys are working together as a family to figure things out. So often, people try to sweep things away or pretend that there's nothing wrong and nothing ever gets better. I know that you have been guided by the Lord and I can see his love for you as you have found the resources that you needed at the time that you needed it. I am so happy to call you guys friends...we are lucky to learn from your example of faithfullness and trust in the Lord. You guys are in our thoughts. Here's to an excellent 2009 full of good changes and homecomings!

  2. Well said Deon. I am glad she is doing well and that she has amazing parents like you and Richard!

  3. I needed to read this today Deon. I was just pondering how it seems the world is so strange, how everyone is just doing their own things, going on with their own lives, and yet there is real hardships, heartache, and difficulties, but I guess we just don't always hear about it. We are having a fast for my sister on sunday who will not be with us much longer, and I just really appreciate you being real and opening up and sharing. It really fulfilled a need that I had today. Oh ya, that same sister has a boy who has Aspergers. Anyway, if there is every any way I can support you or your daughter, please let me know, I would LOVE it.

  4. Thank You for sharing, I was very touched by your testimony. I have often joked that when I gave birth I also had open heart surgery and now my heart goes and beats with my children. I know it hasn't been an easy year and I pray that this one will be easier to bear. I know you feel the love we have for you,and your family.

  5. You all are wonderful examples to our family as to how to work through life's challenges in the Lord's way. We love your whole family so much. Thank you for sharing!

  6. Deon, you and Richard are so wise and such good parents. You are an example to all. As I read this I was reliving this with you and I am so glad she is getting the right help finally. It's been such a long and hard journey for your family. You have been so faith filled through all of it and are a true and living example of what a "real" family and example is to me and I love you guys. God will continue to bless you and be with you.

  7. Thank you for sharing your tender feelings. My parents have been struggling through many of these same issues with my youngest brother and it was good for me to read about your experiences to help increase my understanding about what they are going through themselves. Your faith through all this is an inspiration.

  8. My heart breaks for you and your family to have to struggle with such a trial. What an example you are to me and my family. It's good to hear that everything is looking up. Thank you for Navi's busy book it's so cute and trust me we need alot of new books to keep her busy during Sacrament. We love it and appreciate all your hard work in making it for us. Thanks for thinking of Navi!!!

  9. Hugs to you! Leslie sounds like she is doing great. Did she get to come home again?

  10. Deon,

    This entry is so beautifully written. I always wondered how you would write this someday....this was so inspired. I am so proud of you, of Richard and especially of Leslie and her hard work :o) You are such an awesome family.

    Thank you for sharing....

  11. This is a beautiful post, Deon. I'm glad you felt guided and supported in the journey during the last year and felt the comfort of the spirit. I appreciate your positive attitude and willingness to share. Steph's Cheyenne was diagnosed late after a similar painful moment. She was in-patient at Sheppard Pratt after a suicide scare when the experts finally decided to use the word Aspbergers. I'm glad you don't feel alone through all this. Hugs.

  12. Hey D, I had some time tonight and have been thinking about you and wondering how everything was going. I checked in on you through your blog. I love and miss you and am so glad that you are better than me at posting on your blog. Is Leslie staying in Utah next year? I hope she continues to improve. Take Care!

  13. What a wonderful, honest post. I'm glad to hear of Leslie's new place, good place. Peace.

  14. Deon-I'm so proud of you and Richard. AND LESLIE! The Lord shall take thee by the hand and give thee answers to thy prayers. God bless you-more and more!

    We think my nephew may have Aspergers. Not easy. Thank you for your courage!


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