Posted this in the Nest but wasn't able to tag you. Thought it might encourage you. And thank you forever for teaching me to presume competence!
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I'm writing this from the parking lot of Armstrong Garden Center because I can't wait to share this evidence that our kids are known, loved, and watched over. I've been a little overwhelmed about the future as Sam prepares to go to an adult transition program next year. There are so many unknowns. So I got the urge to go to the garden center this morning and get some fun stuff to plant outside Sam's bedroom window. I saw some young men watering the plants so I asked one of them if they had any honeysuckle. When I saw that he wasn't wearing an employee uniform and by the way that he spoke I realized that he might be autistic and here as part of some kind of program. BECAUSE OF S2C I PRESUMED COMPETENCE!! I wouldn't have known to do that before! He went to ask someone and he came back with a woman I knew!! She was one of Sam's preschool teachers and she is also a member of my church and now she works in the adult transition program at our local high school! (Currently Sam rides a bus to an autism school 30 minutes away.) She described the various activities they do as part of their program, including volunteering at Armstrong Garden Center! (And Sam LOVES that place!) As her students gathered around her, I continued to talk to the teacher but BECAUSE OF S2C I INCLUDED THE STUDENTS TALKED TO THEM LIKE THEY WERE PEOPLE! They were four big guys just like Sam and I could totally see Sam fitting in with them. They invited Sam to come and visit the class. They even take classes at the local community college which is something I know Sam will love. (College would have never crossed my mind before S2C.) This "coincidence" which was not a coincidence was a God Wink to remind me that we are being taken care of! And I'm telling all of you so that you will feel it, too! And it felt so good to interact with those guys and to presume competence and to witness their competence and warmth.
Wednesday, March 27, 2019
Thursday, September 13, 2018
Tricking Yourself Into Journaling
Below is the text of the lesson I taught at a Relief Society activity tonight. A very special thing happened during the lesson. I had been feeling sad today because we just got the final accident report from the NTSB about my brother, Nate's, plane crash. I didn't think we would be getting it until the two-year anniversary in May 2019, so this was unexpected. And I had been kind of hoping for more info than what we already knew, but there wasn't much more to add or any new wreckage found. So the grief that is always just below the surface bubbled up a little. While I was teaching the lesson tonight, I randomly opened up one of my old journals to show an example of how you can combine a to-do list with a journal. The page I opened up to was November 2, 2009–my brother's birthday. And on my to-do list was to wish him a happy birthday. And it was checked off. ❤️
You can't make this stuff up, folks. God is in the details and he is so good to us. Here is my lesson:
Lesson on Creative Writing Through Journaling - - Cardiff Ward Relief Society - - Sept. 13, 2018
How many have never kept a journal or rarely do so? [Jot down names for prize later.]
God has commanded prophets and others through the ages to keep records. People sacrificed their lives to preserve and translate the records that are now our scriptures. I used to wonder why there were not as many women's stories and voices in the standard works. One day I realized that there are thousands of women's stories in the journals of our pioneer predecessors. In the preface to the brand-new church history book called Saints: The Story of the Church of Jesus Christ in the Latter Days, we read, "Saints is not scripture, but like the scriptures, each volume contains divine truth and stories of imperfect people trying to become Saints through the Atonement of Jesus Christ. Their stories—like the stories of all Saints, past and present—remind readers how merciful the Lord has been to His people as they have joined together around the globe to further God's work." Commercial for this book: It is already on LDS gospel library! The audio recording is already there! It reads like a novel but every word is based on historical fact or journals!!
President Kimball, the prophet of my youth, really stressed keeping a journal and you can find his fabulous article called "The Angels May Quote From It" on lds.org. New Era Classic: The Angels May Quote from It - new-era Here is my first journal. [Read the first entry.] "I got this from my grandparents and now I don't have to write my journal on random scraps of paper." I didn't write every day and sometimes only a few times a year but I am so grateful for what I did record. Now, this type of hardback journal is very intimidating to me. I bought this beautiful journal a few years ago at TJMaxx that has all these great inspiring quotes in it, but a journal like this makes me feel like I have to write all neatly and make sure what I say is really amazing. And it's the kind of thing where if I feel like I "have to" write in my journal, I feel guilty if I don't, etc. etc.
Later on, I found a great way to trick myself into journaling and also keep my emotions healthy while I was in the thick of raising kids. Like all of God's commandments, the commandment to keep a record is to help US. [Show my spiral bound mini notebooks.] I always kept this notebook in my purse with a ribbon and a pen attached. On the right-hand side is my to-do list with a square that I got to X in when I accomplished a task. I did NOT cross off the items because this is a record, too! I can go back and be interested in the things I was doing. Even a task like driving my kids to a church activity is poignant to me now. I daily gave myself credit for every little thing I did. I didn't expect to get emotional when gathering these things for this lesson but this is a record of my life, a life made up of millions of little acts of service and joy. I left the facing page blank for recording thoughts or experiences. I would sometimes paste in a note or email I received from a friend. I treasure and preserve nice things people say about me to remind me to feel good about myself. I very deliberately make these choices to keep my mood up. Reading back over these things years later still makes me feel good.
In the process of raising my autistic son, I have done my recording more and more electronically. I document in detail every step of progress he has made. I have a blog that is just for me on which I am SO grateful that I wrote about some of my very worst days and the lessons I learned or what I was struggling with. I love looking back on my journals in my own handwriting and I think hard copies of things are very important. But I have found that the electronic form is so easily shareable with my adult kids. When I am gone they will be able to go back and easily find my words and hopefully get comfort and inspiration from them. When encouraging my kids, I can easily send them a link to something I wrote on my blog.
Now that Sam has started spelling to communicate, I have started a blog for him to record his original words and milestones. Currently it is just a few sentences but it will grow to many pages.
In conclusion, your journal doesn't have to be perfect or pretty. You can jot notes on your phone. You can save emails. You can scribble notes down on a calendar and save your calendars. I used to write down cute things the kids said on my calendar and now those are so precious to me! And if you post on facebook, did you know that you can have your facebook posts and photos made into a printed book?
To the people who rarely journal, I have these journals for you. [Hand out five journals I brought.] Here is a way to trick yourself into journaling. You will be so glad you did it. It will help your mental and spiritual health in the short run and it will bring you so much joy in the long run. I call it the Five and Five. Each day, write down five things you are grateful for and five things you are proud of yourself for. BE SPECIFIC. Don't write down the same general thing every day like that you are grateful for your family. (LAME!) Write things like you are grateful that your toddler pooped in the toilet for the first time, or that your favorite cereal was on sale, or that your college kid surprised you and called you on the phone. This practice will change your life. When you focus on the things that brought you joy, you will see the hand of God in your life and know that you are not forgotten. In the name of Jesus Christ, Amen.
Monday, May 7, 2018
Miracle Shower
Talk in SIS May 2, 2018
Although I dislike public speaking, I appreciate the opportunity to process some thoughts and recent events in my life. I'm supposed to talk about a parable of Jesus, and I was drawn to "consider the lilies". I'm not sure that's a parable but my biblical scholar daughter says it is, so I'm using it!
In Matthew 6:28-30 we read, "And why take ye thought for raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin: And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these. Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?"
"Consider the lilies" means that Heavenly Father gives me exactly what I need in the moment I need it.
On January 30 of 2017, I drove to Del Mar to meet my oldest and dearest friend of 30 years for our regular Monday walk, and was instead met by one of our mutual friends who told me that our friend was in the hospital with stage four cancer and had only days to live. I was naturally shocked and devastated. She's my age and has been like a sister to me for most of my life.
Well, days turned into weeks, she returned home and regained her stamina and we resumed our Monday walks! We also spent many hours together designing a quilt for her little nephew. This quilt project was a great blessing to me as color, creation, and design are a such a balm and balance for my worries.
On March 30 my first grandchild was born!
On April 16 I gave an Easter talk in sacrament meeting about how the natural world and daily events of our lives are full of resurrection messages.
I have a nonspeaking 16-year-old autistic son named Sam who is extremely developmentally disabled and I assumed profoundly mentally retarded. On April 17 I started him on letterboard lessons and discovered that he can read, spell, do math, and is really smart and totally aware of everything!
On May 15 my younger brother was flying a small plane carrying his girlfriend and her two small boys from Puerto Rico to Florida and they crashed in the ocean. The coast guard searched for a week and found only one small piece of the plane and a seat cushion.
Even during this tragedy, I was so aware and grateful that my dear friend was alive and right by my side to support me through this unspeakable event.
Two weeks later we drove to Utah to celebrate my grandson's baby blessing. On the long drive I worked on plans for my brother's memorial, and was met in Utah by cousins who went out of their way to drive to Orem so they could give me a hug.
In the beginning of June, my adult son and daughter with her newborn baby flew to NH with me for my brother's service, and I got to hold my sweet new grandson through the whole thing. Friends and family showered our family with love, music, stunning floral arrangements, stories, and food. My adult kids drove me around for an hour after the service and asked me to "talk about my feelings".
I continued to go on Monday walks with my friend and work on the quilt with her and she listened to me share my sorrows and joys and I did the same for her. She especially cheered for Sam continued progress in spelling to communicate!
In September my adult son who has been out of the church and living six hours away for the past ten years, surprised us by wanting to move back home with his dog! We had not been super close because of the physical and religious distance but he has turned out to be a wonderful brother and trainer for Sam, and an emotionally intelligent and mature son!
Sam used to be extremely self-injurious and part of our shared mission is to help other kids recover from what he went through. In mid-September the company I sell products for released a new item that seemed very promising. I shared about it online and a mom who had just lived through a frightening incident with her son reached out to me. I sent her some products to try and he improved almost immediately and we became instant friends. Seeing the hand of God use Sam and me to help other families is so humbling and strengthening to us.
Sam continued to reveal more and more of himself through his letterboard lessons and started home study seminary which he loves. After we finished listening to the Book of Mormon audiobook, I felt prompted to bear testimony of the Book of Mormon in fast and testimony meeting. Sam and I walked to the pulpit together where, miraculously, he stood completely still by my side and I was voice to our shared testimony.
One month ago, after living joyfully and energetically for more than a year after her diagnosis, my friend passed away peacefully in her sleep. I will be attending her memorial this Saturday. I cry every day about her and my brother. I miss talking to her about my joys and challenges, and texting her cute videos of my grandson. I don't know what to do with my need to text her and talk with her. And it has been almost a year since my brother's passing and I still can't quite believe or process what happened.
On May 15 my younger brother was flying a small plane carrying his girlfriend and her two small boys from Puerto Rico to Florida and they crashed in the ocean. The coast guard searched for a week and found only one small piece of the plane and a seat cushion.
Even during this tragedy, I was so aware and grateful that my dear friend was alive and right by my side to support me through this unspeakable event.
Two weeks later we drove to Utah to celebrate my grandson's baby blessing. On the long drive I worked on plans for my brother's memorial, and was met in Utah by cousins who went out of their way to drive to Orem so they could give me a hug.
In the beginning of June, my adult son and daughter with her newborn baby flew to NH with me for my brother's service, and I got to hold my sweet new grandson through the whole thing. Friends and family showered our family with love, music, stunning floral arrangements, stories, and food. My adult kids drove me around for an hour after the service and asked me to "talk about my feelings".
I continued to go on Monday walks with my friend and work on the quilt with her and she listened to me share my sorrows and joys and I did the same for her. She especially cheered for Sam continued progress in spelling to communicate!
In September my adult son who has been out of the church and living six hours away for the past ten years, surprised us by wanting to move back home with his dog! We had not been super close because of the physical and religious distance but he has turned out to be a wonderful brother and trainer for Sam, and an emotionally intelligent and mature son!
Sam used to be extremely self-injurious and part of our shared mission is to help other kids recover from what he went through. In mid-September the company I sell products for released a new item that seemed very promising. I shared about it online and a mom who had just lived through a frightening incident with her son reached out to me. I sent her some products to try and he improved almost immediately and we became instant friends. Seeing the hand of God use Sam and me to help other families is so humbling and strengthening to us.
Sam continued to reveal more and more of himself through his letterboard lessons and started home study seminary which he loves. After we finished listening to the Book of Mormon audiobook, I felt prompted to bear testimony of the Book of Mormon in fast and testimony meeting. Sam and I walked to the pulpit together where, miraculously, he stood completely still by my side and I was voice to our shared testimony.
One month ago, after living joyfully and energetically for more than a year after her diagnosis, my friend passed away peacefully in her sleep. I will be attending her memorial this Saturday. I cry every day about her and my brother. I miss talking to her about my joys and challenges, and texting her cute videos of my grandson. I don't know what to do with my need to text her and talk with her. And it has been almost a year since my brother's passing and I still can't quite believe or process what happened.
But even though I cry every day, my days are also full of joy!
This Friday night I will be taking my sixteen-year-old son to his first prom. He will look dashing in his new purple shirt and silver bow tie!
Last week I shared natural products for anxiety with six brilliant nonspeaking autistic teenagers. One of them was so anxious about walking outside that he had not been on a walk in a year. He went on his first walk last week!
I am not an animal person at all, but last week I got brave and learned how to take my grand-dog on a walk! What a small thing that is good for my health and brings another creature so much pure joy! My friend was so good at lighting a fire under me and making me walk even when I didn't want to and she was in pain. I feel like my grand-dog is carrying on that job for her.
In Utah last week I visited my kids and grandson, a one-year-old giggling wonder baby, celebrated Julia's BYU graduation, and felt inspired to plan for Sam to attend EFY at BYU next year!
As President Uchtdorf teaches, we can be grateful no matter what. "In any circumstance, our sense of gratitude is nourished by the many and sacred truths we do know: that our Father has given His children the great plan of happiness; that through the Atonement of His Son, Jesus Christ, we can live forever with our loved ones; that in the end, we will have glorious, perfect, and immortal bodies, unburdened by sickness or disability; and that our tears of sadness and loss will be replaced with an abundance of happiness and joy, "good measure, pressed down, and shaken together, and running over." (This whole talk is absolutely fantastic for anyone who is grieving!) https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng
This past 14 months during this time of loss I'm simultaneously experiencing joy and wonderful surprises like I've never known. I call it a "miracle shower".
Last week I shared natural products for anxiety with six brilliant nonspeaking autistic teenagers. One of them was so anxious about walking outside that he had not been on a walk in a year. He went on his first walk last week!
I am not an animal person at all, but last week I got brave and learned how to take my grand-dog on a walk! What a small thing that is good for my health and brings another creature so much pure joy! My friend was so good at lighting a fire under me and making me walk even when I didn't want to and she was in pain. I feel like my grand-dog is carrying on that job for her.
In Utah last week I visited my kids and grandson, a one-year-old giggling wonder baby, celebrated Julia's BYU graduation, and felt inspired to plan for Sam to attend EFY at BYU next year!
As President Uchtdorf teaches, we can be grateful no matter what. "In any circumstance, our sense of gratitude is nourished by the many and sacred truths we do know: that our Father has given His children the great plan of happiness; that through the Atonement of His Son, Jesus Christ, we can live forever with our loved ones; that in the end, we will have glorious, perfect, and immortal bodies, unburdened by sickness or disability; and that our tears of sadness and loss will be replaced with an abundance of happiness and joy, "good measure, pressed down, and shaken together, and running over." (This whole talk is absolutely fantastic for anyone who is grieving!) https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng
This past 14 months during this time of loss I'm simultaneously experiencing joy and wonderful surprises like I've never known. I call it a "miracle shower".
Friday, April 20, 2018
Sunday, March 4, 2018
Testimony Meeting
Sunday, August 27, 2017
First Communion Today
My fifteen-year-old son, who has been coming to church since he was a baby, partook of the sacrament for the first time today. There are several GF families in our ward and each sacrament tray holds a small cup of Rice Chex cereal along with the bread. I never had him partake before because I figured if his severe disability made him exempt from baptism, it made him exempt from everything else. It was a very sacred feeling to watch him eat the Rice Check and drink the little cup of water.
I came home from church to an email from his letterboard teacher including a religious lesson she wrote for him based on the "Who Am I?" topic from mormon.org. It was so touching to read how perfectly this nonmember teacher transferred the information into a beautiful lesson. Makes me feel warm all over. :)
I came home from church to an email from his letterboard teacher including a religious lesson she wrote for him based on the "Who Am I?" topic from mormon.org. It was so touching to read how perfectly this nonmember teacher transferred the information into a beautiful lesson. Makes me feel warm all over. :)
Tuesday, August 15, 2017
Make Room for Joy
As I was busily and happily decluttering and getting my son's room ready for him to live in when he moves back home at the end of August, the words "Make Room For Joy" popped into my head and I knew it should be my theme for August and for this big new chapter in my life. I found some word art of the phrase and printed it out and framed it for my front door. I also believe that my having just paid my tithing allowed the blessing of the new tile floor to come to pass: "Bring ye all the tithes into the storehouse, that there may be meat in mine house, and prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it." Malachi 3:10.
My son came home for just a few days to bring a load of stuff and apply in person for the program he hopes to attend. First thing this morning he drove to campus for orientation and an interview. He called about half an hour later asking if I would bring his passport to him because he needed a second form of ID. I was happy to do it because I knew Sam would enjoy the ride. The extra blessing was seeing my tall, handsome oldest son in front of his (hopefully) new school and fresh start. It was an image I recognized as a treasure. And then as I pulled out of the parking lot onto the main road, I passed the headquarters of Chuao Chocolate on my left, with this beautiful word in front:
Today marks three months since my brother passed over. This doesn't dominate my thoughts but it's always there. What a sweet God Wink to experience this morning. The windows of heaven are overflowing with blessings for me and my family.
Friday, August 4, 2017
He's So Good to Me
Tender mercies are raining down on me right and left. Maybe I'm getting extra help because of my brother's passing, or maybe I'm noticing things more, but I'm so grateful. After about six months of discussion and pondering, my oldest child has decided to move back home (with his dog!) to further his education. I don't know if any of us would have been ready for this five years ago, but ten years after he first left home, this news bathed me in gratitude and relief. It also triggered one of my favorite maternal instincts: Nesting!
As soon as I got the news, I started clearing and reorganizing the room that he'll be using. A few months ago when it was on sale, I bought two bedrooms-worth of the wood-look ceramic tile from Lowes that I have in my living room and Sam's room. I love this stuff! I decided I wanted to get my son's room tiled before he gets here, which was an ambitious goal, plus I didn't want to spend too much.
I found a cheap and highly recommended installer and thought I was all set but turns out he couldn't start for six more weeks. I tried to tell myself it wasn't necessary to have it done by my deadline but I couldn't stop thinking about it. So I thought, what the heck, why not pray for this very specific optional-but-desirable miracle! I knew it wasn't "necessary" but I really wanted to get the tile floor installed before next Friday when my son comes down to drop off his first load of stuff. Plus, I loved the idea of getting all this done while my husband's out of town. It felt like a stretch but I just *knew* it was possible to get it done by next Weds. Focused my thoughts and prayed. Prompted to call a contractor friend's tile guy who I assumed would be super expensive. He called me right back, is equally cheap, and will start tomorrow and be done by Wednesday! God is so good to me.
As soon as I got the news, I started clearing and reorganizing the room that he'll be using. A few months ago when it was on sale, I bought two bedrooms-worth of the wood-look ceramic tile from Lowes that I have in my living room and Sam's room. I love this stuff! I decided I wanted to get my son's room tiled before he gets here, which was an ambitious goal, plus I didn't want to spend too much.
I found a cheap and highly recommended installer and thought I was all set but turns out he couldn't start for six more weeks. I tried to tell myself it wasn't necessary to have it done by my deadline but I couldn't stop thinking about it. So I thought, what the heck, why not pray for this very specific optional-but-desirable miracle! I knew it wasn't "necessary" but I really wanted to get the tile floor installed before next Friday when my son comes down to drop off his first load of stuff. Plus, I loved the idea of getting all this done while my husband's out of town. It felt like a stretch but I just *knew* it was possible to get it done by next Weds. Focused my thoughts and prayed. Prompted to call a contractor friend's tile guy who I assumed would be super expensive. He called me right back, is equally cheap, and will start tomorrow and be done by Wednesday! God is so good to me.
Thursday, June 29, 2017
Wednesday, May 24, 2017
With Apologies to the Kind Bagpipe Player
Read no further if you love the sound of bagpipes. Or you play the bagpipes.
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So many people are just incredibly kind and thoughtful and want to do anything they can to help with my brother's memorial service or whatever will ease our burdens. I am so grateful for people's kindness and generosity, but planning a memorial service is not the most cheery of activities and sometimes you just need a break. Today a dear friend texted me with a few updates on things she was helping with, and the last one was, "Someone has offered to play Amazing Grace on the bagpipes either before or during the service. What should I tell him?"
Major, major, much-needed belly-laughs for me! (See, I don't need to worry about offending bagpipe-lovers because if you are still reading, you can't say I didn't warn you!)
I texted back that this was such a kind offer, but we needed to politely decline.
And then I thought to myself, "If there's anything that would make me feel worse than I already do, it's bagpipes!"
Hahahahahahahahahahaha!
Visiting Teaching by Email
I'm so sorry I haven't chatted with you by phone or in person for such a long time, and now I am connecting with you by email. (It was great to see Q on Sunday and have his sweet offer to play with Sam this summer!) I love that kid.
Last week was a blur (more about that in a sec) and tomorrow we are driving to Utah for our grandson's baby blessing! I will be home next week for a few days, then flying to NH. The "blur" is that last Monday, May 15, 2017, one of my younger brothers perished in a small plane crash over the Caribbean. He was 52 and his girlfriend and her two small boys perished with him. Here is a link to the news story if you are interested:
My visiting teaching message is that God is real, He loves us, and the plan of salvation is real. I know that I will see my brother again, and that someday this will all make sense. Some of it is already making sense. About a week before this happened, we found out that the younger brother (in his 50's) of Cathy M. (RS teacher in our ward and counselor at DNO so I think you know her), was found dead in his home. He was in our ward for a while and we felt so much sadness and sympathy for her to lose her younger brother. The next day at church I saw her and expressed my sympathy, and she asked me to teach RS the following Sunday for her because she would be at her brother's memorial service. Right after I agreed to do it, I remembered that my daughter, Julia, would be visiting for the weekend, and I felt prompted to ask her to teach for me since she loves to teach and she's so good at it. She readily agreed. My brother's plane crashed the very next day, and I would have been in no condition to teach.
So Julia taught RS this past Sunday, and even though she's my girl and I'm biased, it is possibly the best Relief Society lesson I have ever heard. I recorded it on my phone (recording attached) if you want to listen. Both my parents and parents-in-law are still living, and this is the first death in our immediate family. I know that you lost your dad and I don't need to teach you anything about loss, but as my visiting teaching message, I am so grateful for all the truths my daughter taught on Sunday and all the reminders I got at church that this life is just a dot in the eternal plan. I've already listened to the recording--it's that good. Whenever I'm reminded of the plan of salvation, my heart is so lifted.
I'm also so grateful for the absolute miracle that even though I am sad about my brother, the rest of me is still ME, is still able to be happy about things I was happy about before, enjoy the sunshine, good food, flowers, and shopping at Ross! Everything is more beautiful, tastes better, and small kindnesses are more poignant now. And people are SO NICE. I just can't believe how kind people are. A friend of mine who suffered an even more tragic loss when she was a teenager told me that Heavenly Father would give me exactly what I need in the moment I need it, and that has proven to be so true. I am prompted to do the next thing I need to do, or take a break, or something will strike me funny and I will laugh.
I hope you are well! I really do care about you and your life and how you are doing and I hope to see you in person after I get back from NH.
Sunday, April 16, 2017
Easter Talk 2017
Before I start my talk, I’d like to thank and honor my son and eternal missionary companion for making the noble sacrifice of coming to earth in a special body that has taught me so many lessons about becoming a disciple.
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It’s Good Friday, April 14, 2017, and my autistic 15-year-old son, Samuel, should be at school but instead he is lying in his bed and I am sitting at the computer working on my Easter talk and watching him on the video monitor because he had a grand mal seizure this morning. It started at about 7am when I was in the kitchen preparing his breakfast and, thankfully, I heard him yell and gag so I knew something was up and I was able to run to his room, keep his head tilted to the side, watch the clock, keep him from falling onto the tile floor, and pray. Again, thankfully, the seizure lasted a typical 3-4 minutes, and by 8am he was back to normal and happily eating breakfast.
It’s been an eventful week for Sam’s body and my heart. I started writing this talk on Tuesday morning in the dentist’s waiting room while Sam was under general anesthesia. He gets his teeth cleaned four times a year by a wonderful special needs dental team and is able to handle this by being wrapped snugly in something called a papoose board which looks like a small surfboard wrapped in Velcro fabric. If he wasn’t wrapped securely, he would get up and run away, or start hitting himself to protest. But when he has cavities that need filling as he did this week, he has to be put under.
It took months to get this appointment with an anesthesiologist who would come to the dentist’s office, so I was grateful that the day had finally come, but I was also dreading it for many reasons, the most serious being the fear of something going wrong leading to my child’s death. But aside from the risk of death, with an autistic teenage boy who is bigger than me, getting him to the point of being put into a drug-induced sleep is fraught with risks. That morning I had woken up at 5:15 to give Sam his seizure meds which the doctor had said he could have two hours before the procedure. At 6:45 I put the wheelchair and backpack with epi-pen and other emergency supplies in the car, then got Sam dressed and into the car.
Side Note: He used to try to hit himself every 20 minutes. Now it is only about once a week when he is triggered. The most risky times are mornings, especially when he hasn’t eaten yet, has a very short car ride, people talk to him, or he’s asked to go to a new environment. Every one of those factors applied to this morning, and as I was getting him ready he started to whine and I was praying hard that he wouldn’t escalate out of control. We made it to the dentist’s office without incident and I prayed hard that Sam wouldn’t be triggered by the receptionist’s cheery “Hello!” Thankfully, we didn’t have to wait too long to move into the treatment room and Sam willingly sat in the dental chair. The doctor gave him a shot of a calming medication and although Sam was wiggly, he miraculously stayed put long enough to have five separate monitor wires attached.
Finally, it was time to put the mask on his face and I held his hand and told him I loved him as I watched his eyes close and his body relax. The doctor said, “Mom, it’s time for you to leave.” Tears filled my eyes as I left my baby in that room and came out to the waiting room where a kind worker gave me a gift certificate to get something at the café downstairs.
Now, I still get choked up when I think about saying goodbye to Sam in that little room, but he was home and back to normal in two hours and from this vantage point the whole dreaded experience hardly seems relevant!
Isn’t it amazing how, in so many cases, how frequently and quickly we are healed?!
I have been struggling a great deal lately with the fear of death and separation from people I love. I just got home from spending a week in Utah with my first grandchild and I cried like a baby when I had to say goodbye to him and my big kids. My son, Sam, is literally at risk of death all the time. He has seizures a couple of times a year and every time he does, as I watch his body contort, lips turn blue, and face turn gray, I almost feel like I am watching him die, and pray that he will come back. I remind my husband all the time to watch Sam closely at church because “there are so many nuts there”!
No offense, but there really are, in the form of candy, trail mix, peanut butter sandwiches, and granola bars! With his life-threatening allergy to nuts, and the quickness with which Sam can grab food from others, church is probably one of the most dangerous places for Sam. Even when we are at home, I can never quite relax. When we are in different rooms I am watching him on the video monitor or listening for sounds of distress.
Yikes, what a downer this talk is so far! What does all this have to do with Easter?!
I’d like to close with another dental office experience, a blog entry I wrote exactly two years ago after a day that God resurrected for me:
March 31, 2015: This morning I had scheduled a dentist appointment for Sam that would require us to leave the house at the same time the bus would normally come to pick him up for school, so I figured I could handle this and then drive him straight to school, which takes about thirty minutes and is two towns away. Mornings have improved so much over the past couple of years that, although I was stressed about getting him ready on time and not making a scene in the dentist's office, I figured it was all going to be fine.
Unfortunately he started the day irritable and on edge but I was able to get him fed and dressed and out to the driveway on time.
I had called the school bus company to tell them not to come, but when we went outside, the bus was there at the end of the driveway, waiting for him! His driver and aide are two sweet little ladies in their 60's who absolutely dote on Sam, but they hadn’t received the message. As I told them that Sam would not be riding this morning, he started flipping his head and hitting himself in the face. Since I knew that I was never going to get him calm enough for his dentist appointment, and he always calms down quickly on the bus, I said, "On second thought, yeah, why don't you take him!" But he was flailing so intensely that I just had to get him safely into the house so he could calm down. The ladies were very concerned--seeing my big boy hit and yell like this is unsettling for anyone to witness--and they so kindly offered to help and brought my purse into the house for me.
I was able to brace Sam’s arms to protect his face without getting my face hit in the process while I walked him back into the house, and he calmed down quickly in his room while I sat at the kitchen table formulating Plan B. I phoned the dentist and cancelled the appointment and then scheduled his appointments for the next six months, all for much later in the day. Then I remembered that his backpack was all ready for school and in my car so I got him out of his room and he was really happy to ride in the car.
Whenever I have to drive the hour round trip to school instead of having that hour to myself, I'm pretty resentful. But as soon as I drove out of my neighborhood and into the undeveloped hilly areas leading up to the highway, I realized that, as usual, Sam had gotten me where I needed to be. I turned on my "Praise Baby" Christian CD and started singing along. I saw the explosion of yellow wildflowers that had burst onto the scene since I had last driven on the highway. In their vibrant colors I heard each one of them singing praises to our Creator.
When I arrived at Sam’s school, which specializes in severely autistic kids from ten to twenty years old, right next to me in the parking lot was a 250-pound full-grown young adult in the back of his dad's mini-van, lying across the third seat, refusing to get out. A petite female school aide was standing by and the dad was trying to figure out what to do without provoking the young man. Being deeply aware of how one wrong move can trigger a really difficult situation, I prayed for them.
Sam happily got out of the car and ambled to his classroom. On the way home I decided to drive along the coast, drink in the sight of the ocean, and count how many different colors of wildflowers I could see. Because of this "rough morning" I got to see wildflowers in several shades of yellow, orange, hot pink, white, and purple. I saw waves crashing on the Pacific coastline, smelled salty mist, felt warm air on my skin, thought about my church lessons from yesterday and what a blessing it is to have a body.
Because of Jesus Christ's atonement, He was able to heal my morning and make it a sacred communion between me and Him.
Happy Resurrection Day! He lives!
In the name of Jesus Christ, Amen.
------------------------------
It’s Good Friday, April 14, 2017, and my autistic 15-year-old son, Samuel, should be at school but instead he is lying in his bed and I am sitting at the computer working on my Easter talk and watching him on the video monitor because he had a grand mal seizure this morning. It started at about 7am when I was in the kitchen preparing his breakfast and, thankfully, I heard him yell and gag so I knew something was up and I was able to run to his room, keep his head tilted to the side, watch the clock, keep him from falling onto the tile floor, and pray. Again, thankfully, the seizure lasted a typical 3-4 minutes, and by 8am he was back to normal and happily eating breakfast.
It’s been an eventful week for Sam’s body and my heart. I started writing this talk on Tuesday morning in the dentist’s waiting room while Sam was under general anesthesia. He gets his teeth cleaned four times a year by a wonderful special needs dental team and is able to handle this by being wrapped snugly in something called a papoose board which looks like a small surfboard wrapped in Velcro fabric. If he wasn’t wrapped securely, he would get up and run away, or start hitting himself to protest. But when he has cavities that need filling as he did this week, he has to be put under.
It took months to get this appointment with an anesthesiologist who would come to the dentist’s office, so I was grateful that the day had finally come, but I was also dreading it for many reasons, the most serious being the fear of something going wrong leading to my child’s death. But aside from the risk of death, with an autistic teenage boy who is bigger than me, getting him to the point of being put into a drug-induced sleep is fraught with risks. That morning I had woken up at 5:15 to give Sam his seizure meds which the doctor had said he could have two hours before the procedure. At 6:45 I put the wheelchair and backpack with epi-pen and other emergency supplies in the car, then got Sam dressed and into the car.
Side Note: He used to try to hit himself every 20 minutes. Now it is only about once a week when he is triggered. The most risky times are mornings, especially when he hasn’t eaten yet, has a very short car ride, people talk to him, or he’s asked to go to a new environment. Every one of those factors applied to this morning, and as I was getting him ready he started to whine and I was praying hard that he wouldn’t escalate out of control. We made it to the dentist’s office without incident and I prayed hard that Sam wouldn’t be triggered by the receptionist’s cheery “Hello!” Thankfully, we didn’t have to wait too long to move into the treatment room and Sam willingly sat in the dental chair. The doctor gave him a shot of a calming medication and although Sam was wiggly, he miraculously stayed put long enough to have five separate monitor wires attached.
Finally, it was time to put the mask on his face and I held his hand and told him I loved him as I watched his eyes close and his body relax. The doctor said, “Mom, it’s time for you to leave.” Tears filled my eyes as I left my baby in that room and came out to the waiting room where a kind worker gave me a gift certificate to get something at the café downstairs.
Now, I still get choked up when I think about saying goodbye to Sam in that little room, but he was home and back to normal in two hours and from this vantage point the whole dreaded experience hardly seems relevant!
Isn’t it amazing how, in so many cases, how frequently and quickly we are healed?!
I have been struggling a great deal lately with the fear of death and separation from people I love. I just got home from spending a week in Utah with my first grandchild and I cried like a baby when I had to say goodbye to him and my big kids. My son, Sam, is literally at risk of death all the time. He has seizures a couple of times a year and every time he does, as I watch his body contort, lips turn blue, and face turn gray, I almost feel like I am watching him die, and pray that he will come back. I remind my husband all the time to watch Sam closely at church because “there are so many nuts there”!
No offense, but there really are, in the form of candy, trail mix, peanut butter sandwiches, and granola bars! With his life-threatening allergy to nuts, and the quickness with which Sam can grab food from others, church is probably one of the most dangerous places for Sam. Even when we are at home, I can never quite relax. When we are in different rooms I am watching him on the video monitor or listening for sounds of distress.
Yikes, what a downer this talk is so far! What does all this have to do with Easter?!
Because I love my family and friends, and because we are all mortal and live in a risky world, I am inexpressibly grateful to Jesus for making it so that I never have to be permanently separated from the people I love. I know with all my heart that we knew each other in the spirit world before we came to earth, and we will be together again after we die, and as promised in the Doctrine & Covenants:
“that same sociality which exists among us here will exist among us there, only it will be coupled with eternal glory, which glory we do not now enjoy.” D&C 130:2
I also cling to the promise in 1 Corinthians that:
“eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him.” 1 Corinthians 2:9
Finally, we are promised in the book of Revelation that:
“God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.” Revelation 21:4
So, people, we know the story has a happy ending! Because of Jesus Christ’s life, atonement, and resurrection, I know that everything turns out all right in the end! So why should I be worried?
I guess it’s because I’m not a patient person. I don’t like waiting. And we are here, living this life, day in and day out, not just sitting around waiting for Heaven.
I believe that as we walk through this mortal journey, we can be bathed in hope by realizing that we can experience Easter Sunday every day! The prophets Alma and Moses testify that:
“all things denote there is a God; yea, even the earth, and all things that are upon the face of it, yea, and its motion, yea, and also all the planets which move in their regular form do witness that there is a Supreme Creator.” Alma 30:44
“And behold, all things have their likeness, and all things are created and made to bear record of me, both things which are temporal, and things which are spiritual; things which are in the heavens above, and things which are on the earth, and things which are in the earth, and things which are under the earth, both above and beneath: all things bear record of me.” Moses 6:63
Resurrection messages are everywhere! Here are just a few that I noticed this week:
--Sam came out of anesthesia with repaired teeth and no side effects.
--He missed a day of school, but that afternoon Lisa came over and watched him so I could go to Trader Joe’s.
--At Trader Joe’s I bought myself some purple tulips just for the sheer beauty and joy of them. When I got them home, they were extremely limp and floppy. I trimmed the ends, put them in water, and by the next morning they were all standing at attention, full of water and life!
--I was teary about missing my grandson, but the next morning I woke up to an email from my daughter with a link to 100 new photos of him.
--This ward is full of nuts, but even more full of angels of all ages who I can trust to watch out for Sam.
I believe that every time we experience healing, joy, beauty, renewal, hope, repair, cleansing, growth, forgiveness, a sunrise, new life, a second chance, repentance, reunion, relief…..or even something as simple as a haircut or a fresh coat of paint, God is reminding us of resurrection morning.
“that same sociality which exists among us here will exist among us there, only it will be coupled with eternal glory, which glory we do not now enjoy.” D&C 130:2
I also cling to the promise in 1 Corinthians that:
“eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him.” 1 Corinthians 2:9
Finally, we are promised in the book of Revelation that:
“God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.” Revelation 21:4
So, people, we know the story has a happy ending! Because of Jesus Christ’s life, atonement, and resurrection, I know that everything turns out all right in the end! So why should I be worried?
I guess it’s because I’m not a patient person. I don’t like waiting. And we are here, living this life, day in and day out, not just sitting around waiting for Heaven.
I believe that as we walk through this mortal journey, we can be bathed in hope by realizing that we can experience Easter Sunday every day! The prophets Alma and Moses testify that:
“all things denote there is a God; yea, even the earth, and all things that are upon the face of it, yea, and its motion, yea, and also all the planets which move in their regular form do witness that there is a Supreme Creator.” Alma 30:44
“And behold, all things have their likeness, and all things are created and made to bear record of me, both things which are temporal, and things which are spiritual; things which are in the heavens above, and things which are on the earth, and things which are in the earth, and things which are under the earth, both above and beneath: all things bear record of me.” Moses 6:63
Resurrection messages are everywhere! Here are just a few that I noticed this week:
--Sam came out of anesthesia with repaired teeth and no side effects.
--He missed a day of school, but that afternoon Lisa came over and watched him so I could go to Trader Joe’s.
--At Trader Joe’s I bought myself some purple tulips just for the sheer beauty and joy of them. When I got them home, they were extremely limp and floppy. I trimmed the ends, put them in water, and by the next morning they were all standing at attention, full of water and life!
--I was teary about missing my grandson, but the next morning I woke up to an email from my daughter with a link to 100 new photos of him.
--This ward is full of nuts, but even more full of angels of all ages who I can trust to watch out for Sam.
I believe that every time we experience healing, joy, beauty, renewal, hope, repair, cleansing, growth, forgiveness, a sunrise, new life, a second chance, repentance, reunion, relief…..or even something as simple as a haircut or a fresh coat of paint, God is reminding us of resurrection morning.
I’d like to close with another dental office experience, a blog entry I wrote exactly two years ago after a day that God resurrected for me:
March 31, 2015: This morning I had scheduled a dentist appointment for Sam that would require us to leave the house at the same time the bus would normally come to pick him up for school, so I figured I could handle this and then drive him straight to school, which takes about thirty minutes and is two towns away. Mornings have improved so much over the past couple of years that, although I was stressed about getting him ready on time and not making a scene in the dentist's office, I figured it was all going to be fine.
Unfortunately he started the day irritable and on edge but I was able to get him fed and dressed and out to the driveway on time.
I had called the school bus company to tell them not to come, but when we went outside, the bus was there at the end of the driveway, waiting for him! His driver and aide are two sweet little ladies in their 60's who absolutely dote on Sam, but they hadn’t received the message. As I told them that Sam would not be riding this morning, he started flipping his head and hitting himself in the face. Since I knew that I was never going to get him calm enough for his dentist appointment, and he always calms down quickly on the bus, I said, "On second thought, yeah, why don't you take him!" But he was flailing so intensely that I just had to get him safely into the house so he could calm down. The ladies were very concerned--seeing my big boy hit and yell like this is unsettling for anyone to witness--and they so kindly offered to help and brought my purse into the house for me.
I was able to brace Sam’s arms to protect his face without getting my face hit in the process while I walked him back into the house, and he calmed down quickly in his room while I sat at the kitchen table formulating Plan B. I phoned the dentist and cancelled the appointment and then scheduled his appointments for the next six months, all for much later in the day. Then I remembered that his backpack was all ready for school and in my car so I got him out of his room and he was really happy to ride in the car.
Whenever I have to drive the hour round trip to school instead of having that hour to myself, I'm pretty resentful. But as soon as I drove out of my neighborhood and into the undeveloped hilly areas leading up to the highway, I realized that, as usual, Sam had gotten me where I needed to be. I turned on my "Praise Baby" Christian CD and started singing along. I saw the explosion of yellow wildflowers that had burst onto the scene since I had last driven on the highway. In their vibrant colors I heard each one of them singing praises to our Creator.
When I arrived at Sam’s school, which specializes in severely autistic kids from ten to twenty years old, right next to me in the parking lot was a 250-pound full-grown young adult in the back of his dad's mini-van, lying across the third seat, refusing to get out. A petite female school aide was standing by and the dad was trying to figure out what to do without provoking the young man. Being deeply aware of how one wrong move can trigger a really difficult situation, I prayed for them.
Sam happily got out of the car and ambled to his classroom. On the way home I decided to drive along the coast, drink in the sight of the ocean, and count how many different colors of wildflowers I could see. Because of this "rough morning" I got to see wildflowers in several shades of yellow, orange, hot pink, white, and purple. I saw waves crashing on the Pacific coastline, smelled salty mist, felt warm air on my skin, thought about my church lessons from yesterday and what a blessing it is to have a body.
Because of Jesus Christ's atonement, He was able to heal my morning and make it a sacred communion between me and Him.
Happy Resurrection Day! He lives!
In the name of Jesus Christ, Amen.
Watch this beautiful short video about the Prince of Peace.
Friday, April 14, 2017
Eric Huntsman Easter Good Friday Talk and Samuel
My daughter's academic advisor/mentor/employer Dr. Eric Huntsman gave this wonderful talk last year about Good Friday that I happened to find today (Good Friday 2017) because my dear friend, Betsy, posted it on facebook. My Sam had just had a seizure and was therefore staying home from school today (last year he had a seizure on Easter; see this post). And I am also in the process of writing the sacrament meeting talk I've been asked to give this Easter Sunday. Many thanks to my Samuel (for having the seizure and thus providing more material for my talk) and Dr. Huntsman for inspiring me and talking about his autistic son, Samuel.
Monday, May 23, 2016
No Self-Injurious Behavior for a MONTH!!
I just checked my notes and his most recent SIB was April 24! That means no self-injurious behavior at school or at home for a MONTH!!!!!!! The last time this happened was before it all started when he was about nine years old!!
Sunday, May 8, 2016
Miraculous Graduation and Wedding Weeks
One year ago we made a road trip to Utah in which our son did great in the car but had a couple of intense tantrums in the hotel and while visiting relatives. We took the same road trip a couple of weeks ago and he made many transitions in and out of the car, visited relatives, attended a graduation ceremony, and stayed in a hotel, all without a single tantrum and most of the time with a smile on his face. He was incredibly easy-going and resilient. I don't think we've ever been on a tantrum-free trip with him. Yippee!
Then a week later he had an AMAZING day on my daughter's wedding day! Just as we couldn't have come up with a better son-in-law if we had custom-designed him ourselves, my son's behavior and happiness on April 29 were beyond my wildest expectations. He handled a house full of girls getting their hair and makeup done. Then he got dressed in fancy clothes. Then he had to get out of his chair a bunch of times and stand up and hold still at the temple for family photos and seemed to actually enjoy it! He KNEW he looked awesome in his bowtie and fancy clothes! And then he absolutely thrived and rocked out at the reception, dancing vigorously and not once being bothered by all the people or the music! What a wonderful day!
This weekend he had two seizures 11 hours apart. Yes it was upsetting and concerning. But Heavenly Father timed them on the weekend that would be most convenient and least distressing. Last weekend was my daughter's wedding. The weekend before was our road trip to graduation in Utah. And next weekend I will be flying to Utah for the Utah wedding reception. God is so very good to us!
Then a week later he had an AMAZING day on my daughter's wedding day! Just as we couldn't have come up with a better son-in-law if we had custom-designed him ourselves, my son's behavior and happiness on April 29 were beyond my wildest expectations. He handled a house full of girls getting their hair and makeup done. Then he got dressed in fancy clothes. Then he had to get out of his chair a bunch of times and stand up and hold still at the temple for family photos and seemed to actually enjoy it! He KNEW he looked awesome in his bowtie and fancy clothes! And then he absolutely thrived and rocked out at the reception, dancing vigorously and not once being bothered by all the people or the music! What a wonderful day!
This weekend he had two seizures 11 hours apart. Yes it was upsetting and concerning. But Heavenly Father timed them on the weekend that would be most convenient and least distressing. Last weekend was my daughter's wedding. The weekend before was our road trip to graduation in Utah. And next weekend I will be flying to Utah for the Utah wedding reception. God is so very good to us!
Birthday Rap from My Little Rapper
I miss my big kids so much and when they record something for me I want to listen over and over. My youngest daughter wrote and recorded this for me for my last birthday and I am posting it here so I can find it again.
https://rapchat.me/share-rap.html?rapid=651B22EB-035E-40CB-B148-DC1FF43C60CA
Sent from my iPhone
https://rapchat.me/share-rap.html?rapid=651B22EB-035E-40CB-B148-DC1FF43C60CA
Sent from my iPhone
Sunday, March 27, 2016
Immediate Blessings After Seizure
Happy Easter! My son had a seizure as we were getting ready for church this morning but he was stable enough to stay in my husband's care while I attended the 11:00 service of another ward which meets in our building and was full of old friends. How blessed I was to get to hear Grant bless the sacrament, watch Connie lead the choir, and hear Liz and Greg's powerful Easter talks. Most touching to me were their personal witnesses and experiences. As Liz told of having the sacrament brought to her and her widowed sister who had spent three weeks in the hospital dealing with complicated health issues, tears came to my eyes as I was reminded that the Savior is right there with me in my challenges. Greg told of his aunt, a daughter of Harold B. Lee, as she was dying of cancer, testifying to him that she WOULD see him again. (Greg is not a big cryer so it meant a lot to me to see his emotion when he shared this.) Then he was able to attend the funeral which included Presidents Hinckley and Monson. Greg read from his journal entry of this experience including President Hinckley's powerful testimony of Jesus Christ. Greg is my beloved former bishop who gave me inspired priesthood blessings before we adopted our son. Heavenly Father knew what He was doing in giving me today's trial and then immediately blessing me with inspired words from old friends.
In addition, I had a wonderful phone call from a member of my daughters' ward in Utah who needs a mentor so we talk on the phone once a week and she appreciates me SO much. In addition, she shared her observations of what wonderful women my daughters are and how blessed she feels to have them as friends. I felt blessed to fill a need for this young woman as well as feeling closer to my girls in the process.
I miss my grown kids so much it hurts, especially on Sundays and holidays, so I wanted to write about all the ways Heavenly Father is blessing me and showing me that He remembers me.
In addition, I had a wonderful phone call from a member of my daughters' ward in Utah who needs a mentor so we talk on the phone once a week and she appreciates me SO much. In addition, she shared her observations of what wonderful women my daughters are and how blessed she feels to have them as friends. I felt blessed to fill a need for this young woman as well as feeling closer to my girls in the process.
I miss my grown kids so much it hurts, especially on Sundays and holidays, so I wanted to write about all the ways Heavenly Father is blessing me and showing me that He remembers me.
Sunday, February 28, 2016
On His Fourteenth Birthday
Birthdays are bittersweet with a severely developmentally delayed child because although he IS growing and developing in miraculous ways, with the help of the supplements, diet, and therapies he is getting, it still smacks you in the face when you think about your child being fourteen and still needing so much care.
But I must set that aside because this birthday was full of miracles! I have always sent some sort of decorated fresh fruit treat to school on past birthdays and done a minimal celebration at home, not having any idea whether he understood or cared. This year I decided to have a Ninja Turtle theme and sent bags of oranges with Ninja Turtle tags on them to school, and had a Ninja Turtle cupcake tower at home with green fruits and vegetables on it that we ate with mini swords.
So the big news is, THIS YEAR HE CARED! He was into his birthday! The school told me he laughed and smiled when they sang Happy Birthday to him! And he did the same thing at home when the guests at his home party sang to him! It is usually so hard to get him to smile for photos but this time he was smiling easily because he knew what was happening and LOVED IT!
Praise the Lord!
Friday, October 23, 2015
God's Impeccable Timing at the Post Office
I am somewhat ashamed to admit that because I feel so pressed for time when my son is in school, that when I go to the post office I keep my head down and try to get in and out as quickly as possible. I'm hyper-aware of EVERYONE's needs and I'm afraid I will get sucked in and not be able to take care of the people I'm already taking care of. I'm even more ashamed to admit that when I am at the automated postal machines and there is an older person at the machine next to me, obviously having trouble figuring it out, I hope they won't ask me for help. Today I was at a machine and I heard the older person next to me heaving a big sigh. "Oh no," I thought. Then she turned to me and asked, "Would you help me? I have rheumatoid arthritis and I can't straighten my fingers. Would you insert my credit card into the reader for me? I did it and then I watched her use her knuckles to deftly make her remaining selections on the touch screen. I got up my courage and asked her if she would like to try something for her RA. I pulled out a sample packet and gave her my card and an info booklet. We got chatting and I found out that she has a grandson with autism, and then I was able to tell her about my successes with my son. I mean, really, what are the odds?! In spite of my weaknesses and what I do or don't do, God is AMAZING at getting me where I need to be, with split-second accuracy.
Wednesday, October 21, 2015
Isaiah and Me
Like many people, the Isaiah chapters in the Book of Mormon are not the easiest for me to grasp so I'm grateful that I was given the assignment in my scripture class to study the chapters and report for 2-3 minutes on what I felt was God's message to me during this particular round of reading. As we know, each time you read the scriptures you get another layer of messages from God. My little talk:
What I loved the most was the verses with nature imagery because they remind me of how God shows His love for me through His creations. For example, here are three verses in no particular order that touched me:
Sing, O heavens, and be joyful, O earth; for the feet of those who are in the east shall be established; and break forth into singing, O mountains; for they shall be smitten no more; for the Lor hath comforted his people.
And they thirsted not; he led them through the deserts; he caused the waters to flow out of the rock for them; he clave the rock also and the waters gushed out.
They shall not hunger nor thirst, neither shall the heat nor the sun smite them; for he that hath mercy on them shall lead them; even by the springs of water shall he guide them.
Then I thought about how much I'd been pondering on this quote that a friend had posted on facebook a few days ago:
"There is a big circle that represents God... [and a]... little circle that represents you and me is inside the big circle. The goal... is to realize that you have been all along, contrary to all of your illusions, a dimension of the divine, and in moments of heightened spiritual awareness, the boundary line, which is the little circle defining you inside the big circle, momentarily is erased. Momentarily is blurred and it's no longer clear where you end and God begins." - Rabbi Laurence Kushner
The breezes, the stars, and the leaves on the trees remind me that I am bathed in that big circle full of atoms and molecules of God's love.
Thursday, October 15, 2015
Paused for five seconds!
3:45am, after going strong since 2:00am, he paused for five whole seconds! Progress!
Why Am I Up at 3:30am?
Because my son decided to start exercising his voice, at the top of his lungs, at 2:00am and is showing no signs of letting up. This is just what he was doing on Sunday. At least he has a deep voice, not like the kid who rides the bus with him who screams exactly like a pterodactyl. Over and over.
I'm going to be like Nephi, as we learned in scripture study class today, and be grateful:
--We have electricity and food.
--My husband gets home in 2.5 days.
--I found a new, fun crochet scarf pattern that I started while my son was ASLEEP. LAST NIGHT. Remember that??
--I got an hour of sleep before he woke up.
--The school bus comes in only five hours.
--He can't keep this up for five more hours, can he?
--When he gets on the bus I can go back to sleep.
--In eternity this night will be a distant memory.
--I got to watch this wonderful talk that my daughter pointed me to:
Make.It.Stop.
Please.
Sunday, October 11, 2015
Note to Self: This is a Marathon, Not a Sprint
My son started a new neuro program recently that I am very excited about. It has been a long time since I have been open to introducing a new "program" but it's a sign that he is doing so well physically and emotionally that his body is ready to be taught. And it's a sign that I am now ready to handle something more. This weekend I overdid it so I wrote this to process and as a reminder to pace myself.
My son was holding the vibrating massager in his mouth for a while as I was getting ready for church. After I took it out and led him to the car, he started very LOUD vocalizing, not upset, just loud and persistent. This is not a new behavior but it doesn't happen super often any more, and most Sundays my husband is able to sit with him in the chapel while I lead the music. He rarely needs to take him out to the foyer anymore. When my son has gotten into this vocalizing groove before, nothing I've tried has gotten him out of it. When we got to church I took my son directly to the foyer for Sacrament Meeting because he was so loud and couldn't stop. I tried putting the massager near his mouth, or feeding him, and he was just as loud even as he was chewing his food. I had already been alone with him for the entire previous day since my husband had left early in the morning to fly to Asia (usually he takes my son out for several hours on Saturday afternoons, and takes care of him during Sacrament Meeting), and I really wanted to hear the meeting. He was so loud that I knew he could be heard in the chapel and I could barely hear the audio that was piped into the foyer. Two of my friends took pity on me and insisted on sitting with my son while I sat in the chapel and enjoyed the meeting. Then one of them took him for the second hour and her husband took him for the third hour, spending part of it driving him around in their car. Angels.
(Developmental Note: The sounds that he was making were varied and one friend says she heard a phrase (I can't remember what) and the other says she heard him say, "Banana.")
The weather has been extremely hot and I had to work not to berate myself for only doing one neuro session with my son on Saturday, and for not taking him out for a drive like he usually gets when my husband is home.
Church was awesome and my son's behavior was perfect today, so things could have been worse, and they have been MUCH worse. I have experienced many, many very difficult Sundays over the past 4-5 years dealing with his extreme tantrums and self-injury. Today he was just being happy and expressive, but my tears flowed easily and often just from the sheer burden of feeling that this was all on my shoulders, then from gratitude for the sacrament passed to me by a smiling twelve-year old, and the help, kindness, and true words that came from my dear friends and teachers.
He was calm and quiet when I got him back after church, and we enjoyed a long drive in the air-conditioned car, and then I got the idea to do one of his neuro eye exercises by driving slow left-turn circles (in the air-conditioned car!) in our cul-de-sac! This worked well and when I glanced back at my son it looked like his eyes were doing the right thing. I wanted to do ten but could only do eight before I became dizzy. Still, it counts!
I realized today that I need to remember that this is a marathon, not a sprint. Whenever I start a new thing with my son, I am very gung-ho and do my best to do everything I'm supposed to do, not to mention the detailed reporting that I like to do. I need to realize that because I'm using my afternoon helpers to help with the program, and I'm personally actively participating, I'm cutting into time that used to be 100% respite for me. Even though his self-injury is almost completely gone, he is BIG, I cook all his food from scratch, and I still have a lot of diapers to change and laundry to wash. I need to pace myself and give myself a break. I really appreciate that the neuro doc I'm working with is not pushing too hard like I was pushed in the last program I did, which was helpful but also traumatic for me. I'm also grateful that this doc does housecalls and direct treatment, and that I have wonderful helpers to do some of the exercises.
I realized today that even though I thought I was handling everything well, that when my friends offered to help today and I burst into tears, I really needed the respite. This allowed me to replenish myself and others to have the blessing of spending time with my son.
Wednesday, October 7, 2015
Emotional First Aid: "Let's BOP!"
I created this graphic as a quick way to remind a friend who struggles with ups and downs to remember how to get herself back on track. Often when we are stressed out we are too distracted to do the things that will help us feel better. As often seems to happen with me, I had the opportunity to take my own advice:
I was getting ready to go away by myself for a few days, something I had been looking forward to but which also required a lot of preparation of food and meds for my son. Even though I had done quite a bit more ahead of time than I usually do, the week of the trip I found myself going through my typical pre-trip panic. I used oils, which are super supportive emotionally, but had not done the other two steps. I was in my son's room with him and remembered to pray and read the Book of Mormon, which was convenient as there was a copy right next to me on his bookshelf. I said a quick prayer and grabbed the book which fell open to Mosiah 24. I started reading and was not overwhelmed by the content but I kept on reading. Then I turned the page and verse 14 jumped out at me:
"And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions."
Um, that is MY scripture. That was one that helped me through the years of trying to find answers to the self-injury. And it was a personal message to me that God knows me and knows what I'm going through. I love this book and the comfort and truth it contains!
Sunday, October 4, 2015
You Get to Keep the Joy
I've been struggling with things in my life feeling unsettled or not happening when I want them to. There are several people I know from church or elsewhere who are dealing with mysterious health challenges like I have gone through with my son. I shared some of these thoughts in testimony meeting last week and had been meaning to type them in my journal:
"And let us not be weary in well doing; for in due season we shall reap, if we faint not." Galatians 6:9
"Wherefore, be not weary in well-doing, for ye are laying the foundation of a great work. And out of small things proceeded that which is great." D&C 64:33
We have no idea how long it took Noah to build the ark or any of the other miraculously epic accomplishments that we read about in the scriptures, not to mention the women who had miracle children in their old age after years of infertility. A journey of a thousand miles is made up of single steps combined with a vision of what God wants for you. This is God's pattern in everything, including the development of a fetus, then a child, growth of a tree, construction of a building, family, or organization. You can't rush things and you can't skip steps. When someone appears to have an overnight conversion or a miraculous healing, there are many small steps that have laid the foundation for it, helped the person build their faith, or prepared the person to receive it. There are many among us who are struggling with seemingly intractable health or other challenges. Five years ago I embarked on a desperate search to get my son to stop trying to constantly hit himself. After one year of medical consultations, meds that didn't work, karate helmets and boxing gloves, a lot of blood and bruises when he wiggled out of his protective gear, and several nearly broken noses for me, I finally found someone who knew how to help him. My son has been improving gradually for the past four years, and for the past year he has only tried to hit himself once a week instead of every twenty minutes, and he calms down almost instantly. I testify that the atonement of Jesus Christ is real and washes away all pain and sorrow, but you get to keep the lessons and the joy!
"And let us not be weary in well doing; for in due season we shall reap, if we faint not." Galatians 6:9
"Wherefore, be not weary in well-doing, for ye are laying the foundation of a great work. And out of small things proceeded that which is great." D&C 64:33
We have no idea how long it took Noah to build the ark or any of the other miraculously epic accomplishments that we read about in the scriptures, not to mention the women who had miracle children in their old age after years of infertility. A journey of a thousand miles is made up of single steps combined with a vision of what God wants for you. This is God's pattern in everything, including the development of a fetus, then a child, growth of a tree, construction of a building, family, or organization. You can't rush things and you can't skip steps. When someone appears to have an overnight conversion or a miraculous healing, there are many small steps that have laid the foundation for it, helped the person build their faith, or prepared the person to receive it. There are many among us who are struggling with seemingly intractable health or other challenges. Five years ago I embarked on a desperate search to get my son to stop trying to constantly hit himself. After one year of medical consultations, meds that didn't work, karate helmets and boxing gloves, a lot of blood and bruises when he wiggled out of his protective gear, and several nearly broken noses for me, I finally found someone who knew how to help him. My son has been improving gradually for the past four years, and for the past year he has only tried to hit himself once a week instead of every twenty minutes, and he calms down almost instantly. I testify that the atonement of Jesus Christ is real and washes away all pain and sorrow, but you get to keep the lessons and the joy!
Friday, May 22, 2015
A Special Kind of Missionary Mom
Last Sunday I was waiting for Sacrament Meeting to start and looking at the son of a dear friend who had just returned from an honorable two-year mission and would be giving his homecoming talk in our meeting. I felt emotional and grateful that he was home safely and had served such a wonderful mission. He had had severe health challenges in his teens and it was such a poignant moment to see him there, healthy and strong, with the adoring eyes of his parents on him.
Then I thought back to my own missionary's homecoming talk and what a unique and sacred opportunity it was for me to be a missionary mom. I thought how I could easily *not* have been a missionary mom if my child had made a different choice, and it is something that you can't really understand until you experience it. I felt sorry for women who don't get to be missionary moms.
Then I felt the Spirit whisper to me, "Someday you will feel sorry for women who don't get to be special needs moms."
Then I thought back to my own missionary's homecoming talk and what a unique and sacred opportunity it was for me to be a missionary mom. I thought how I could easily *not* have been a missionary mom if my child had made a different choice, and it is something that you can't really understand until you experience it. I felt sorry for women who don't get to be missionary moms.
Then I felt the Spirit whisper to me, "Someday you will feel sorry for women who don't get to be special needs moms."
My Son's Hands
My son is the only student on a big yellow bus that takes him to his autism school thirty minutes away. There is a driver and an aide and these teams change from time to time. My favorite team is two of the SWEETEST ladies I like to call "The Mexican Grandmas". I can hear them happily chattering to each other in Spanish as I walk with my son to the door of the bus. The bus is immaculate inside, and there is always a smiley-face fleece blanket hanging neatly on the bar behind the driver's seat. When it rains, the driver always leaves a towel on the bottom step to wipe your feet on. Both ladies squeal with delight when Sam steps onto the bus, and they talk to him as if he was their own precious baby.
This morning the driver reached out and held Sam's hand to help him climb up the bus stairs. She look sincerely into my eyes and said, "I LOVE it when he holds my hand. I feel something very special from him." I said, "Yes, he has a very special spirit, doesn't he?" She said, "Yes! That's it. Very special."
This morning the driver reached out and held Sam's hand to help him climb up the bus stairs. She look sincerely into my eyes and said, "I LOVE it when he holds my hand. I feel something very special from him." I said, "Yes, he has a very special spirit, doesn't he?" She said, "Yes! That's it. Very special."
Saturday, May 16, 2015
"A Voice from the Dust"
A lot of change seems to be happening in my life, including my trying to accept that my three older kids are spending most of their time away from home and even the United States. One grown child who lives a few hours drive from here talks about moving to Portland or NYC, one is in Jerusalem, and one is in Mexico. Meanwhile, my youngest has grown taller than both his parents and all but one of his siblings; even though he's progressing I feel more and more concerned (and guilty) that he is still in diapers and nonverbal and wondering how we are ever going to keep taking care of him as we age and he just grows stronger.
One way I've been coping with missing my older kids is by adopting a young mom whose own mom passed away about six months ago, helping her decorate her house, and decorating my patio and having their little family over for dinner. My friend's little girls notice everything cute I make so it's very rewarding. I call them my "practice grandchildren." (And Heavenly Father knows that decorating is key to my joy!) Another thing I've been doing is massively decluttering my house (preparing for the second half of my life) and this afternoon I was dusting off (literally!!) an old journal and found a letter from a friend who had written about being guided and protected by God even through times of great change. Reading her reassuring words was almost like uncovering a lost page in my patriarchal blessing and was so comforting to me today!
"And he answered, Fear not: for they that be with us are more than they that be with them. And Elisha prayed, and said, Lord, I pray thee, open his eyes, that he may see. And the Lord opened the eyes of the young man; and he saw: and, behold, the mountain was full of horses and chariots of fire round about Elisha." 2 Kings 6:16-17
Tuesday, March 31, 2015
A GPS Moment
A friend was telling me yesterday that God can ALWAYS take any difficult situation and turn it into good. She likened it to a GPS system that when you make a wrong turn, recalculates and gives you new directions to still get you to your destination. I loved that analogy.
This morning I had scheduled a dentist appointment for my son that would require us to leave the house at the same time the bus would normally come to pick him up for school, so I figured I could handle this and then drive him straight to school, which takes about thirty minutes and is two towns away. Mornings have improved so much over the past couple of years that, although I was stressed about getting him ready on time and not making a scene in the dentist's office, I figured it was all going to be fine.
Unfortunately he started the day irritable and on edge but I was able to get him fed and dressed and out to the driveway on time.
But the school bus was there at the end of the driveway, waiting for him! His driver and aide are two sweet ladies in their 60's with lovely Spanish accents who absolutely dote on my son. Even though I had told them on Friday that he wouldn't be riding this morning, and I had left a message with the dispatcher, they did not get the information. As I told them that my son would not be riding this morning, he started flipping his head and hitting himself in the face. Since I knew that I was never going to get him calm enough for his dentist appointment, and he always calms down quickly on the bus, I said, "On second thought, yeah, why don't you take him!" But I didn't have his seatbelt harness on and he was flailing so intensely that I just had to get him safely into the house so he could calm down. The ladies were very concerned--seeing my 5'8" son hit and yell like this is unsettling to anyone to witness--and they so kindly offered to help and brought my purse into the house for me.
I was able to brace my son's arms to protect his face without getting my face hit in the process (which is pretty impressive since he is now as tall as I am) while I walked him back into the house, and he calmed down quickly in his room while I sat at the kitchen table formulating Plan B. I phoned the dentist and cancelled the appointment and then scheduled his appointments for the next six months, all for much later in the day. Then I remembered that his backpack was all ready for school and in my car so I got him out of his room and he was really happy to ride in the car.
Whenever I have to drive the hour round trip to school instead of having that hour to myself, I'm pretty resentful. But as soon as I drove out of my neighborhood and into the undeveloped hilly areas leading up to the highway, I realized again that my son had gotten me where I needed to be. I turned on my "Praise Baby" Christian CD and started singing along. I saw the explosion of yellow wildflowers that had burst onto the scene since I had last driven on the highway. In their vibrant colors I heard each one of them singing praises to our Creator.
When I arrived at my son's school, which specializes in severely autistic kids from ten to twenty years old, right next to me in the parking lot was a 250-pound full-grown kid in the back of his dad's mini-van, lying across the third seat, refusing to get out. A female school aide was standing by and the dad was trying to figure out what to do without provoking the young man. Being deeply aware of how one wrong move can trigger a really difficult situation, I prayed for them.
My son happily got out of the car and ambled to his classroom. On the way home I decided to drive along the Pacific Coast, drink in the sight of the ocean, and count how many different colors of wildflowers I could see. Because of this "rough morning" I got to see wildflowers in several shades of yellow, orange, hot pink, white, and purple. I saw waves crashing on the Pacific coastline, smelled salty mist, felt warm air on my skin, thought about my church lessons from yesterday and what a blessing it is to have a body.
Because of Jesus Christ's atonement, He was able to heal my morning and make it a sacred communion between me and Him.
Happy Easter! He lives!
-----------
https://www.youtube.com/watch?v=wdZViD4rxDE
https://www.youtube.com/watch?v=7-zJHgaoVa4
Indescribable
From the highest of heights to the depths of the sea
Creations revealing Your majesty
From the colors of fall to the fragrance of spring
Every creature unique in the song that it sings
All exclaiming
Chorus:
Indescribable, uncontainable, You place the stars in the sky and You know
Them by name, You are amazing God
All powerful, untamable, awestruck we fall to our knees as we humbly
Proclaim, You are amazing God
Who sees lightning bolts and tells them where they should go or
Sees heavenly store houses laden in snow
Who imagined the sun and gave source to it's light
Yet conceals it to bring us the coolness of night
None can fathom
(Repeat Chorus)
Chorus 2:
Incomparable, unchangeable, You've seen the depths of my heart and You love
Me the same, You are amazing God
You are amazing God
This morning I had scheduled a dentist appointment for my son that would require us to leave the house at the same time the bus would normally come to pick him up for school, so I figured I could handle this and then drive him straight to school, which takes about thirty minutes and is two towns away. Mornings have improved so much over the past couple of years that, although I was stressed about getting him ready on time and not making a scene in the dentist's office, I figured it was all going to be fine.
Unfortunately he started the day irritable and on edge but I was able to get him fed and dressed and out to the driveway on time.
But the school bus was there at the end of the driveway, waiting for him! His driver and aide are two sweet ladies in their 60's with lovely Spanish accents who absolutely dote on my son. Even though I had told them on Friday that he wouldn't be riding this morning, and I had left a message with the dispatcher, they did not get the information. As I told them that my son would not be riding this morning, he started flipping his head and hitting himself in the face. Since I knew that I was never going to get him calm enough for his dentist appointment, and he always calms down quickly on the bus, I said, "On second thought, yeah, why don't you take him!" But I didn't have his seatbelt harness on and he was flailing so intensely that I just had to get him safely into the house so he could calm down. The ladies were very concerned--seeing my 5'8" son hit and yell like this is unsettling to anyone to witness--and they so kindly offered to help and brought my purse into the house for me.
I was able to brace my son's arms to protect his face without getting my face hit in the process (which is pretty impressive since he is now as tall as I am) while I walked him back into the house, and he calmed down quickly in his room while I sat at the kitchen table formulating Plan B. I phoned the dentist and cancelled the appointment and then scheduled his appointments for the next six months, all for much later in the day. Then I remembered that his backpack was all ready for school and in my car so I got him out of his room and he was really happy to ride in the car.
Whenever I have to drive the hour round trip to school instead of having that hour to myself, I'm pretty resentful. But as soon as I drove out of my neighborhood and into the undeveloped hilly areas leading up to the highway, I realized again that my son had gotten me where I needed to be. I turned on my "Praise Baby" Christian CD and started singing along. I saw the explosion of yellow wildflowers that had burst onto the scene since I had last driven on the highway. In their vibrant colors I heard each one of them singing praises to our Creator.
When I arrived at my son's school, which specializes in severely autistic kids from ten to twenty years old, right next to me in the parking lot was a 250-pound full-grown kid in the back of his dad's mini-van, lying across the third seat, refusing to get out. A female school aide was standing by and the dad was trying to figure out what to do without provoking the young man. Being deeply aware of how one wrong move can trigger a really difficult situation, I prayed for them.
My son happily got out of the car and ambled to his classroom. On the way home I decided to drive along the Pacific Coast, drink in the sight of the ocean, and count how many different colors of wildflowers I could see. Because of this "rough morning" I got to see wildflowers in several shades of yellow, orange, hot pink, white, and purple. I saw waves crashing on the Pacific coastline, smelled salty mist, felt warm air on my skin, thought about my church lessons from yesterday and what a blessing it is to have a body.
Because of Jesus Christ's atonement, He was able to heal my morning and make it a sacred communion between me and Him.
Happy Easter! He lives!
-----------
https://www.youtube.com/watch?v=wdZViD4rxDE
https://www.youtube.com/watch?v=7-zJHgaoVa4
Indescribable
From the highest of heights to the depths of the sea
Creations revealing Your majesty
From the colors of fall to the fragrance of spring
Every creature unique in the song that it sings
All exclaiming
Chorus:
Indescribable, uncontainable, You place the stars in the sky and You know
Them by name, You are amazing God
All powerful, untamable, awestruck we fall to our knees as we humbly
Proclaim, You are amazing God
Who sees lightning bolts and tells them where they should go or
Sees heavenly store houses laden in snow
Who imagined the sun and gave source to it's light
Yet conceals it to bring us the coolness of night
None can fathom
(Repeat Chorus)
Chorus 2:
Incomparable, unchangeable, You've seen the depths of my heart and You love
Me the same, You are amazing God
You are amazing God
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