Ordinary People

http://byutv.org/watch/05979139-d411-428e-9fe0-5645e63e5109

Tender Mercies

My son is walking like his foot hurts but he's nonverbal so he can't tell me, so I wanted to take him to see our great podiatrist. I've also been wanting him to be reevaluated by his private/expensive/genius physical therapist to see if we can make his walking look better and make it easier for him to go down stairs. Then I can take that report to his school/state-paid-for physical therapist and try to get their help.

Today when I went to pick him up early from school so he could see his neurologist (hate to have him miss school and me miss time alone but that was the only appointment we could get) his teacher said they are off next Friday AND Monday.

Really??

Oh, GREAT.

Then I thought, hmm, maybe I can take advantage of this. I called the podiatrist and the physical therapist, and guess who is free on each of those days off?!! Yep. Now I've got the appointments made, they're coming up soon, and won't cut into school.

It's things like this that remind me that somebody upstairs is watching out for us.

Great Costco Shopping Tip With Kids Too Heavy to Put in Cart

Although my son can walk, we have a sturdy wheelchair/stroller that we use to keep him contained when we go shopping. My husband was out of town last Saturday when I really needed to get some things that could only be gotten there. Not one to ask for help at a store (although I'm sure if I asked I could probably have asked the store for an assistant but then I would have had to make conversation and that would have stressed me out.) Anyway, I just brought some sturdy shopping bags and hung them on the handles of the stroller and was just fine. S., however, thought of an ingenious idea; see below: Wow, I can't believe you have to put your pictures on hinges and tie your vases to the wall!! The creative things special moms dream up!! How great that you have a way to share those priceless tips. Here's one I figured out just today: instead of lifting my son into the main compartment grocery cart at Costco (it's getting next to impossible) I let him plop down on one of those flat pallets with wheels. It never occurred to me before because I thought those carts were for businesses and supersized families. It saved my back and saved me from the nightmare possibility of both of us falling while I try to hurl him into those tall carts. [Please excuse the interruption but the visual you just produced there was hilarious! I think it was the "hurl" part that got me....] It also erased my worries of him falling and/or having an embarrassing meltdown because he can't walk anymore. Have you ever tried this? Maybe your son would resist the urge of banging his head and enjoy the motion so close to the ground :)  Maybe that's totally in left field because I know very little about autism.........if so, sorry :(  S., don't be sorry! That is a fabulous idea! He loves motion and vibration! Don't hold back--you never know when something you say could be just what someone else needs to hear.

Why I Started This Blog

I wrote the epiphany that is the first post in this blog, a few days ago and shared it with a friend who asked if she could share it with a friend who then shared it with S., the mom of a little boy with a degenerative muscle disease. I received her response to my email on Saturday night, while I was fasting, and after returning home from the Relief Society Broadcast, and was so touched by her email, that I knew I needed to start this blog. She generously gave me permission to post her note here: 3 Nights ago, Blue & Gold Banquet. Boys racking in the awards, aquanauts, swimming, basketball, soccer, etc. etc. etc. Overachievers of America it felt like, because I get bitter sometimes. My son got the good manners belt loop (but that's so cute and precious I told myself, not bad). While the other kids ran around and played and laughed, he wandered carefully around us, alone for most of it (but I want him to be running around and having fun I told myself). I thought about all the scout things he won't be doing with all those boys there anyways, like hiking, archery, and normal camping and trek. I wondered whose house he's going to be able to get into when he's in a power chair and why he's advancing to the next den with two leaders who never asked for the extra special workload and are probably just as perplexed as we are sometimes about how to adapt scouting for a little boy with a terminal disability and why? Not that scouts is an eternal principal or anything, but that's just "run down me" that's been sick this week and that's why I'm struggling in addition to crying over what that mom in California said.   Thank you thank you for sharing. I am going to print that email and glue it somewhere for me to convert myself to it. PS- I was so feeling like a loser yesterday because my new "over 40 memory loss" helped me schedule two things at the same time yesterday. Lighthouse Market Research where they do not accept your stand-in, and Adaptive PE Assessment with the District pro yesterday. And guess what? I had to send my sick husband to the school to deal with adaptive PE while I was answering questions about dairy. I felt so stupid, and guilty for not realizing the scheduling conflict until both appointments were hours away, putting it off on my sick husband, and bummed I missed out on important school talk about my son. And that was how it was going to end, but after reading the email, I see the blessing of my "scheduling conflict". LOVE you. And thank B. for sharing too because now I feel less bitter about scouts and less stupid about yesterday. ------ S., I was so touched by your real, and heartfelt letter. Even though you feel less bitter now, I still want to tell you something. It is the greatest blessing in the world for those scout leaders, and the boys, to adapt the program so that your son can be included.  They are disciples of Jesus Christ!  I used to keep my son and myself out of the circle everyone else was in, but I've hired teenagers from church (and several won't let me pay them) to play with and do the neuroplasticity exercises with my son. We had one family volunteer to take him for five days so we could go on a vacation, and THEY thanked US for the experience.  I know our boys don't share the same disability but I related SO much to what you wrote. There are teenagers in my ward whose lives will be changed forever because of working with my son--two of them have said they want to work with kids like him as a career. One young adult who spent many years as a "bad boy" teaches my son swimming lessons once a week, won't let me pay him, and credits this service as a direct link to blessings he has desperately needed and recently received. Just accept a big virtual hug from me! I relate to a lot of what you're going through, but you will be so blessed if you let others into your son's life, and they will be, too. I'm going to put the Primary policy on disability on another post to show how committed church members should be to inclusion.

Eagle Eyes

This is a must-watch, beautifully-done film showing the spirit and intelligence within the most disabled bodies, and technology that's being created to help them communicate. http://www.byutv.org/watch/2164-101

Read the Book of Mormon to Your Child No Matter What the Disability

When I first watched the Carly Fleischman video in February 2010 I was struck by the fact that she understood everything people had been saying to (and about) her all those years, and she thanked her father for reading to her. I was so impressed with him for having the faith to read to her even though he had no evidence she understood. He also apologized for talking about her in front of her as if she wasn't there, and that struck a chord with me. I tried to remember this but it was easy to slip back into old habits.  I was also very touched when Elder Bednar said that "Regular reading of and talking about the Book of Mormon invite the power to resist temptation and to produce feelings of love within our families.....Youth of all ages, even infants, can and do respond to the distinctive spirit of the Book of Mormon. Children may not understand all of the words and stories, but they certainly can feel the "familiar spirit" described by Isaiah (Isaiah 29:4; see also 2 Nephi 26:16)." http://lds.org/general-conference/2010/04/watching-with-all-perseverance?lang=eng One of the very first things I was taught at the neuroplasticity program was how I should talk to our son (not like a baby) and THAT I should talk to him all the time, about what we were doing and why. How fascinating that spoken language is such a key component of the system.  Reading the Book of Mormon in their baptism year (the year they turn eight) is a ritual that is done in our ward, and the kids who do it earn a small seagull statue. All three of our older kids did it and although it was a lot of work both for them and for us to help them read a 531 page book in King James Bible-style language, it was a spiritual and temporal blessing both to them and to us. And in a secular point of view, this was a huge boost to each child's reading skills. In fact, many teachers of kids who are reading the Book of Mormon at home have remarked on how their reading has skyrocketed. I believe that our currently nonverbal nine-year-old will be blessed in the same way, by regular exposure to this book, just as my other kids were. As a side note, last year we decided not to have him baptized because although it is a personal family decision, people with extreme developmental disabilities are considered innocent and not in "need" of baptism. Mormons don't baptize infants and wait for the age of accountability (eight) to baptize their children. Of course I am re-thinking all this and at some point we will ask our son if he would like to be baptized. When our other children were working on the reading goal, my husband was usually the one who read with the kids and by the time the third child was ready she often read while listening to the audio recording. I don't remember personally spending much time reading the Book of Mormon with my other kids. I evangelize about a lot of things--one of them is neuroplasticity, and one of them is Harry Potter. Whenever I run into someone who has not read the books I am incredulous. A while back I emailed a friend of mine who was trying to learn how to unwind, telling her that there is nothing sweeter than snuggling up with your eight year old and reading Harry Potter together. Soon after that, my own words resonated with me, and I thought, hmmmmm...I have an eight year old.....and decided to start reading Harry Potter to him. And then I decided to start having him listen to the audio Book of Mormon in his room at night. But this recent strong true belief that he is really in there and listening, along with the need to have more spiritual power in my life that the book promises, prompted me to start reading to him directly a few weeks ago. It has been an absolutely wonderful experience to sit on the couch with my son and read while he snuggles and smiles. I'm pleased to note that except when I was out of town I haven't missed a day of reading the Book of Mormon aloud to him in the morning while we wait for the bus. It's a calming ritual for both of us, and although he has the run of the house, he chooses to sit right next to me on the couch and listen quietly while I read. (What a contrast to the pre-bus ritual that we had just a few months ago, in which I would literally pray that I would be able to get him out the door without getting my nose broken.) Last week I got teary as I read the part where Christ visits the Americas and then the tears really flowed as I thought about how my daughter was leaving for college the next day. I told my son I was sad that she was leaving and about how much fun we had had this summer but that we would skype her and told him when we would see her next. It's not easy to have a one-way conversation but it was a special moment between us. A year ago we never explained anything to him about her leaving for college, and only after two weeks of him being extra fussy did we realize that he was probably missing her.  I know that reading the Book of Mormon daily will bless the lives of every member of our family, as promised by Marion G. Romney: "I feel certain that if, in our homes, parents will read from the Book of Mormon prayerfully and regularly, both by themselves and with their children, the spirit of that great book will come to permeate our homes and all who dwell therein. The spirit of reverence will increase; mutual respect and consideration for each other will grow. The spirit of contention will depart. Parents will counsel their children in greater love and wisdom. Children will be more responsive and submissive to the counsel of their parents. Righteousness will increase. Faith, hope, and charity—the pure love of Christ—will abound in our homes and lives, bringing in their wake peace, joy, and happiness." (Ensign, May 1980, p. 67).

"Teaching Children with Disabilities"

Last Sunday my son practiced for the Primary Sacrament Meeting Program to be held on October 9 in front of the whole congregation. A year ago we wouldn't have dreamed of having him participate, in fact, until about five months ago he spent a lot of his time at church having tantrums. Now he sits through Sacrament Meeting and then goes to two hours of Primary without me or his dad. For his part in the program, one of his classmates will walk up to the front with him and say his part for him. I found this page in the 2011 Primary Children's outline, and I'm pleased to say that my son's Primary leaders and peers are loving and inclusive, just like the document says. Click on the image to zoom it up, or go to this link for the entire document.  http://lds.org/pa/primary/pdf/PR_2011_SharingTime_08635_000_eng.pdf?lang=eng

Special Needs Decorating: Hanging Pictures from Hinges

I wrote this on November 25, 2009 ------------- I told my husband tonight that we were basically going to need to decorate the living room like a motel or a waiting room at Children's Hospital--everything solid and bolted down. Today I was able to rehang a favorite picture that our son had taken off the wall and broken the glass. I bought a sheet of plexiglass at Home Depot and cut it to size; it was under $12. Then I found the studs in the wall, screwed hinges to the back of my picture frame, drew a level line, and screwed the hinges into the studs. It looks great and might even stand up to our boy! Update: Since then I have rehung all of our pictures like this. He can flip them up all he wants and it doesn't bother me.

Special Needs Decorating: Fresh Mantlepiece Flowers

I wrote this on December 3, 2008 ---------- My special first grader, tall for his age, is totally obsessed with plants and flowers and used to bat these vases off the mantelpiece every chance he got. Since I love having fresh flowers in my LR (purchased cheaply at the grocery store or picked from my yard--even tree branches will do), I decided to out-smart him. I found these metal pots and vases at the 99cents store. I marked the desired positions, poked a hole in the middle of each pot with a hammer and nail, then screwed the pots into the wood of the mantelpiece. (The mantelpiece itself was nothing special--just a pine shelf board and moulding I put up myself--so I didn't care about putting holes in it.) Then I screwed metal eyelets into the wall behind where each vase would go. Luckily there was a horizontal stud there so they are quite secure. Finally, I just put the flower-filled vases in the pots, and tied them to the eyelets with string. When I get around to it I'll replace the regular string with clear fishline. Fresh flowers make any room special and they make me smile.

Lesson From a Fallen Tree

This was originally written on September 27, 2009 --------- On Friday morning, this melaleuca tree in our side yard fell over without any warning. Thankfully, no one was parked under it or walking under it when it happened. As you can see from the close-up photo, it looks like it had practically no roots at all. In contrast, the leaves and branches above were way overgrown so the tree had become very top-heavy. It got to the point that the roots were no longer able to support the demands at the top of the tree. I love how many life analogies you can make with trees. Today we had a wonderful lesson in church on faith and how our faith needs to be deeply rooted in order to withstand the challenges we will experience in life. I made a more personal analogy this week. My husband had been on a business trip to Asia for two weeks. Even though my older kids are pretty independent, being mom AND dad for two weeks was getting to me. I could tell that I was getting overwhelmed and needed to pull back and take care of myself. I was aware of compassionate needs at church to which I felt I should contribute, but all I could do was hibernate and take care of my house and myself. This was the right choice. I think it is not coincidental that because I was hibernating and cleaning out my daughter's closet, I was able to find the helmet I needed for my son when he started banging his head. After making sure I took good care of myself last week, "deepening my roots" I am more able to serve others this week. This analogy applies to the house as well. If you take care of the foundations in your home (I love the routines to be found on flylady.net) such has knowing what's for dinner, having the dishes done, beds made, food in the house, the foundation is there for unexpected "leaves and branches" in your day and it makes everything go much more peacefully.

Turning Poo Positive

I originally wrote this on December 3, 2009 ------------ I walked by my white tile bathroom this morning, surprised and delighted by how clean it looked. It hasn't looked this bright in a long time. Then I remembered that my son had pooed all over the floor last night, but look at what a positive this turned out to be if I look at it this way: --Before it happened, my son was happily eating at the dinner table. He stopped eating on his own (rare for him), stood up, gave me a meaningful look, and I took him to the bathroom. He was actually taking cues from his body ahead of time and trying to communicate with me. He didn't quite make it to the toilet but this awareness is a huge step. --Because I had to get down on my hands and knees and clean the floor and the whole toilet, I got to see a sparkling clean area this morning. Turning your mind around like this takes practice and fuel. You need to practice this every time you have a critical or negative thought. If you hear yourself thinking or saying something defeatist, STOP and restate it in a positive way. Don't say anything unkind to yourself that you wouldn't say to your own sweet daughter. The fuel comes from gratitude, fun, and joy. Brent Top said, "A grateful heart increases spiritual strength." Practice gratitude. Every day write down five things you are grateful for. Recognize the many little gifts God gives us every day. Throughout the day my mind is awash in grateful thoughts. My emotional "bucket" has been full recently, because I've been exercising, taking care of the house, and working on a creative and uplifting project. I have something interesting to think about while I'm taking care of my house and family, and something to look forward to for when I'm not. I'm full of the Spirit while doing this project because it is helping to bring happiness to another person, and that infuses life and light into everything else I do, even cleaning poop off the floor.

Inspiring Words from Elder Holland

"In the gospel of Jesus Christ you have help from both sides of the veil and you must never forget that. When disappointment and discouragement strike, and they will, you remember and never forget that if our eyes could be opened we would see horses and chariots of fire as far as the eye can see riding at reckless speed to come to our protection. They will always be there, these armies of heaven, in defense of Abraham's seed." --Jeffrey R. Holland, "For Times of Trouble," New Era, Oct. 1980, 15

Keeping Your Marriage Healthy

Just thought I'd throw this in. It is so easy to neglect everyone else in your life except your special needs child, including yourself. This book, And They Were Not Ashamed, is a must-read for every LDS woman. http://www.amazon.com/They-Were-Not-Ashamed-Strengthening/dp/1587830345/ref=sr_1_1?ie=UTF8&qid=1316929497&sr=8-1

Mothers Who Know

By General Relief Society President Julie Beck, one of the best talks of all time. http://lds.org/general-conference/2007/10/mothers-who-know?lang=eng

Our Shared Autism

I promise this is not a commercial for Brain Highways. I just wanted to post something I wrote in June about how BH had changed our lives. ----------- On our first day at BH the director talked about all of us being inside a circle but my son being on the outside and we needed to bring him in. What I realized was that I have been experiencing my own kind of autism. I have been outside the circle, and I am being invited in. Before BH I had two lives, the one when my son was with me and the one when my son was at school. When he was at school I did church service, got together with friends, and did creative projects. But once he was home we never did play dates or played outside with other kids like we did yesterday. He was content to stare at his favorite bush and walk back and forth next to it, for a long time, while I chatted with a friend. Kids his age would say hi to him but there was no interaction. To pass the time I would take him on long car drives or for walks in his stroller, or to therapy appointments.  When he was with me he was living the life of an infant. I can't begin to thank BH for drawing Sam and me out of our shared autism, into the world with everybody else.

The Letter I Wrote to FlyLady

I just dug out this letter I wrote to FlyLady seven years ago. I think my "God Breeze" is coming to pass! ----------- July 24, 2006 Dear FlyLady, Thank you so much for providing this outlet for the FlyBabies to express our gratitude and share our experiences. Whether or not you are able to publish a testimonial, it fills an important need for me to be allowed to express it. I've been flying since April and for the past few months have been devouring the FlyShow archives as I go on my morning walks. Several times you and Leanne have said that as we start to FLY and get our homes under control, our personal mission will be unfolded to us. So I've started to wonder, what is my personal mission? The obvious one, aside from caring for my husband and older children, is our youngest child with multiple special needs. He will probably be dependent his whole life, and caring for him and teaching him is clearly a mission. But there was something else. One day last week I told one of his therapists, in frustration, "There's no book on how to raise him! I don't know what I'm doing." She replied, "We're the professionals and we don't have a book, either. Maybe someday someone will write one." I am a hands-on creative person, with no aspirations to become a writer. I was forced to write & rewrite papers when I was a child. I HATED writing. All I wanted was to be in my room working on a project. Yet I have this compelling need to express myself in writing, which keeps me sane and helps me organize my thoughts. I also have this intense desire to share my knowledge and experiences to help others. And I have the example of you and Leanne who have a mission that is helping so many others, and who write an essay whenever you have a God Breeze. So, about three days ago, in the quiet of the early morning hours, I got my God Breeze. I'm going to start writing essays for other parents of children with special needs. Whenever I have an experience or epiphany and feel inspired to write about it, I'll write an essay and save it on my computer. Maybe it will turn into a book, a blog, or website, not sure yet. ("If I write it, they will come?!") But I know that my unique voice and my willingness to share with others will bless them in a way that can be filled by no one else. Thank you so much for your example and encouragement!

Tiny Flowers

I boldly took my son on a walk today--his IEP used to have a goal to have him walk for 20 feet without plopping down--and now he walks a half a mile to a mile without resting. (I credit most of this gain to Brain Highways--send me an email if you want to know more.) He did great but then started warning me that he had had enough (by hitting his head with his fist--he's nonverbal) when we were still pretty far from home. He threw himself down on the sidewalk and I put my left hand under his head to keep him from banging it on the concrete and with my right hand dialed my friend for a ride home. (I hated to bother her but the "new me" asks for help.) I was just going to wait it out, but you know why I didn't? Because I was tired of people giving us concerned looks and asking if we needed help. It was getting embarrassing. Before I started dialing the phone, I noticed a tiny flower on the sidewalk that had fallen from a tree above. It was perfect and beautiful and detailed and exquisite. I wish I knew what it was called. And in that tiny flower I got this message from God: "I created this world and this universe and this amazing tiny flower. I know when the sparrow falls and when this tiny flower falls and when your son falls. This life is a small moment." And then, later tonight, I went to the General Relief Society Meeting, and what did President Dieter Uchtdorf talk about but tiny flowers?!! (Forget-Me-Nots.)

Epiphany in the Kitchen

The author of this note is a mother who has spent the past five months on an intensive training program for her autistic son, gradually hiring many teenagers and young adults to help her, which has been an incredibly positive experience for everyone, but also very emotionally and physically demanding for her. Recently, while already feeling overwhelmed by the demands of the program, she was physically injured by her son, so badly that she had to call for help. This note was written a week after the injury, following many words of counsel from friends, a visit to the temple, loving support of her family, and her first-ever visit to a holistic healing practitioner. -------- I've been stressed almost to the breaking point recently, saw a holistic health practitioner yesterday which was mainly for my son but I got a mini session as well and left feeling more peaceful and relaxed than I have been in years. I continued feeling peaceful and relaxed through the demands of today and just now got this epiphany while cooking dinner. I think that God really likes to catch me when I'm doing some physical task (probably the reason life is full of physical tasks and that they are a blessing to us) and I often get my best inspirations while working in the kitchen. On Monday in Institute class the teacher said that "doing all you can do" does not mean running yourself ragged to bring one more casserole to someone. It means regularly repenting. That's all. I honestly have a hard time with thinking about repenting because I am so incredibly hard on myself as it is. And then I got this flood of insight, a "reprimand from Above", but it was gentle and loving. --You need to repent of not relaxing. --You need to repent of putting other Gods before Me, such as worrying more about what the program director thinks than what I (God) have told you to do, which is take a step back and take care of yourself and your family emotionally. --You need to repent of constantly criticizing yourself. I don't work that way. --You need to repent of running yourself ragged in the service of others so you have nothing left physically or emotionally. Trust me, I can get the work of my kingdom done even if you don't make that extra casserole.  --And you need to repent of modeling this mistreatment of yourself to your daughters. And... --I am so proud of you for asking your husband to come to your son's back-to-school night with you and him tonight even though you knew he would be busy getting ready for his business trip in the morning. And you knew that there was a good chance he would say no but you risked it anyway. And you went even though the last thing you felt like doing was getting in the car and driving there half an hour away after a busy afternoon, and your son had almost fallen asleep in his room. You went anyway because you know how important it is to get his dad more involved and informed about his life. This was an important step in sharing the burden of his care with others. --I am so proud of you for puttering around alone in the house this morning, not answering the door to the Jehovah's Witnesses even though that makes you feel guilty, and for saying a prayer for them. --I am so proud of you for being so in tune to My prompting to get "Gary" involved with your son. I loved that you were sitting quietly and peacefully riding home in the car from back-to-school night, so that I could touch your heart and remind you of what "Gary" said this afternoon, "Working with your son is the most important and rewarding thing I have ever done in my life." This from a young man who is working so hard to change his life and just found out he will be spending the weekend in jail for some past misdeeds. I promise you that someone will come along to influence your adult son just as you and your son are influencing "Gary". --And I'm so glad that you understand that how or how much your young son progresses is not the point. The point is the people like "Gary" and so many others who are being blessed by being with him. So please let go of stressing the details. ---------- "He answers privately, reaches my reaching, in my Gethsemane, Savior and friend. Gentle the peace he finds, for my beseeching. Constant, he is, and kind, love without end."