Beautiful Heartbreak

I'm really ashamed to admit this, but the other day while I was in the store I was looking at happy-go-lucky strangers thinking, "Your life isn't as hard as mine." My friend sent me this video last night that put it all in perspective. If each of us carried a sign everywhere we went....

http://www.youtube.com/watch?v=xyX-I-um5Kk&feature=youtube_gdata_player

Young Man with Muscular Dystrophy Crowned Homecoming King

My friend sent me the link to this delightful article last night, about a young man who is a good friend of theirs and shares the same disability as her son. http://www.deseretnews.com/article/705392135/Olympus-High-School-elects-disabled-Homecoming-king.html

What if Your blessings Come Through Raindrops, What if Your Healing Comes Through Tears?

My friend whose son has muscular dystrophy sent me this beautiful song containing a message that was just what I needed. http://www.youtube.com/watch?v=1CSVqHcdhXQ We pray for blessings We pray for peace Comfort for family, protection while we sleep We pray for healing, for prosperity We pray for Your mighty hand to ease our suffering All the while, You hear each spoken need Yet love us way too much to give us lesser things. 'Cause what if Your blessings come through raindrops What if Your healing comes through tears What if a thousand sleepless nights Are what it takes to know You're near What if trials of this life are Your mercies in disguise. We pray for wisdom Your voice to hear And we cry in anger when we cannot feel You near We doubt Your goodness, we doubt Your love As if every promise from Your Word is not enough All the while, You hear each desperate plea And long that we'd have faith to believe 'Cause what if Your blessings come through raindrops What if Your healing comes through tears What if a thousand sleepless nights Are what it takes to know You're near And what if trials of this life are Your mercies in disguise When friends betray us When darkness seems to win We know that pain reminds this heart That this is not, this is not our home It's not our home 'Cause what if Your blessings come through raindrops What if Your healing comes through tears And what if a thousand sleepless nights Are what it takes to know You're near What if my greatest disappointments Or the aching of this life Is the revealing of a greater thirst this world can't satisfy And what if trials of this life The rain, the storms, the hardest nights Are Your mercies in disguise

Spontaneous Sign

This morning was really rough, just like yesterday morning. After about 20 minutes into happily eating breakfast, he went ballistic, nothing I did to prevent it worked, I had to restrain him and give him deep pressure. After about twenty minutes of this (yesterday he was ballistic for forty), he became a perfect, sweet little angel, as if nothing had happened. He hits himself throughout the day when he doesn't get his way, but in the mornings, it's clear to me he does it because he has a great proprioceptive sensory need and when he gets it filled, he's perfectly content. Of course, I would like him to fill it in a less damaging way than through hitting. When it was time to give him his Flo-Vent (preventative medicine for asthma), he very consciously sat still, did not try to pull the mask off, and very deliberately inhaled deeply like he is supposed to. He clearly so purposefully did this. I was still very, very upset, and so disappointed that despite my prayers and focus and efforts I still let this get to me. But decided to pull myself together and read aloud from the Book of Mormon while we waited for the bus and I was at the part where it talks about Lehi's Dream and holding to the rod of iron. I knew that as weak and unworthy as I am, that reading the Book of Mormon brings the spirit into our home. And then I had to stop reading because of emotion as I realized that what I was doing right then was clinging to the rod of iron, which is a symbol of the word of God. My son was walking around, in and out of the room I was in, as I was reading, and I heard a hitting sound coming from his direction. GREAT, I thought, he's hitting himself again. But I looked over and he was hitting his left hand to his chest, like a sign-language sign. My "homework" for this week is to look for signs of communication other than hitting, and to reinforce him for them. He sees sign language done at school but so far hasn't demonstrated it there yet. I called his teacher and he says that is close to the sign for "please" they use in the classroom. He has done it before towards me and I've interpreted it to mean, "I love you," so I gave him a hug and said, 'I love you, too."

Poo Prints

In case I haven't mentioned this before, my son is not toilet trained. Yesterday I steam-sanitized my entire tile floor, then when I was done, noticed a small brown thing on the floor that had a shoe print in it, my shoe print, and realized that I had been following the steam cleaner with poop footprints

Knowing the Truth of ALL Things

In my scripture study this morning I was on the very last chapter of the Book of Mormon. I have been struggling with knowing how to proceed with my son. His behavior last week was way out of control and I didn't know what had caused it or if anything had caused it. I have a list of factors and had absolutely no idea which one, if any was to blame. In addition, I'm at a crossroads with the program he's been doing and just feel tired and need help but organizing and scheduling the help is overwhelming. Factors: Prednisone from asthma ER visit? My subconcious attitude? Risperdal dosage? Taking him off lamictal? Apples? Avocadoes? The weather? Feeling very unworthy because I lost my temper with him yesterday, but knowing that the best thing to do was to pray and read my scriptures, I did it. Here I came to Moroni 10:3-5, Moroni's promise, the most famous scripture about how to know if the Book of Mormon is true. But what jumped out at me instead? "And by the power of the Holy Ghost ye may know the truth of all things." Moroni 10:5 What jumped out at me, as if was highlighted, was the word ALL. God cares about every aspect of my life and if I study things out in my mind, ponder, and pray D&C 9:8-9, the Holy Ghost will let me know the truth of ALL things. But that wasn't all. I'm doing an Eastern medicine therapy with him and our third appointment is today. The first visit was absolutely amazing, I felt really good about it, and the second visit was nice but not as amazing....and then we had a horrible week. I'm feeling more ambivalent about today's visit, but am having faith that what happened the first week was truly good, inspirational, and God-sent. The scriptures that followed confirmed that every good thing comes from God: 6 And whatsoever thing is good is just and true; wherefore, nothing that is good denieth the Christ, but acknowledgeth that he is.  7 And ye may aknow that he is, by the power of the Holy Ghost; wherefore I would exhort you that ye deny not the power of God; for he worketh by power, baccording to the faith of the children of men, the same today and tomorrow, and forever.  8 And again, I exhort you, my brethren, that ye deny not theagifts of God, for they are many; and they come from the same God. And there are bdifferent ways that these gifts are administered; but it is the same God who worketh all in all; and they are given by the manifestations of the cSpirit of God unto men, to profit them.  9 aFor behold, to one is given by the Spirit of God, that he maybteach the word of wisdom;  10 And to another, that he may ateach the word of bknowledge by the same Spirit;  11 And to another, exceedingly great afaith; and to another, the gifts of bhealing by the same Spirit;  12 And again, to another, that he may work mighty amiracles;  13 And again, to another, that he may prophesy concerning all things;  14 And again, to another, the beholding of angels and ministering spirits;  15 And again, to another, all kinds of tongues;  16 And again, to another, the interpretation of alanguages and of divers kinds of tongues.  17 And all these gifts come by the Spirit of Christ; and they come unto every man severally, according as he will.  18 And I would exhort you, my beloved brethren, that ye remember that aevery good bgift cometh of Christ.

Demanding Callings

In Institute class yesterday, again we were talking about how the principle that it is by grace that we are saved, "after all we can do" does NOT mean running yourself ragged and then asking for God's help. It means consistently repenting. A woman in the class raised her hand and talked about how there are some callings in the church where you could work on your calling eight hours a day, seven days a week, and still not be done. She said that when she was serving as Relief Society President, she was praying at the end of the week, repenting of all she hadn't accomplished (although I don't agree with the term "repenting" in this case, but that is the word she used) and she decided to really be open to the Spirit about how she should proceed. She said that she was very surprised at times at what she was prompted to do. Even though she had a ton of stuff to do for her calling, and was praying for help with her calling, she would be prompted to do something completely unrelated, like an activity with her family. When she lived close to the Spirit like that, and partnered with the Lord, the work of her calling got done. Even if we are not all Relief Society Presidents or Young Women's Presidents, which of us doesn't have a demanding calling in life? Which of us doesn't feel like even if we worked eight hours a day, seven days a week, we would not get it all done? Let this wise woman's experience be a lesson to all of us. My answer to prayer yesterday after being so overwhelmed with my son and his behavior and my impatience with it, was to send him off with my husband and watch "The Sing Off" with my daughter while mending a shirt for her.

Mother's Halo

I got punched in the nose this morning and wanted to tell someone who would sympathize. When I tell my family I get met with blank stares. It's kind of amazing to me that my husband can be getting ready for work and (I'm assuming), in earshot of my son flailing and banging his head and does not come to my rescue. He's just used to me handling this--a 114 pound boy who is strong enough to cover his body with bruises with his punches. Maybe he's as numb and in denial as I am--that this will get better, not worse, as our son gets bigger. To his credit, he was in the shower and might not have heard. And a few weeks ago when my son got me in the nose with the back of his head and I thought it was broken and I called my husband at work, through uncontrollable sobs, he came right home.  At least this morning it was a fist, not a head, that got me in the nose, and I was in the cross-fire as my son was trying to punch himself in the face, not me. To add to the joy of this morning, in my anxiety to get my son to the bus, which was already waiting outside, I forgot to take the "Fun Noodle" off my head, which I had fashioned into something I like to call "Mother's Halo" to give me some cushioning when I'm bending over and getting my son dressed in case he decides to head-butt me. It's actually incredibly useful--it doesn't completely protect me but it makes me feel a lot safer when my head is near his. The scene you would have seen if you had been peeking through my kitchen window this morning was actually pretty funny. To get him calm (his proprioceptive system is way out of whack in the morning) I had put the dustbuster on my son's lap, the electric toothbrush in his hand, and had the nebulizer going to give him his breathing treatment. (If the power had gone out this morning, we would have been sunk!!) He was very content sitting there, but got mad when I had to turn everything off to get him to the bus. So my nose hurts, and I'm sick of being hurt and my son hurting himself. But it's not broken, or even bleeding. The bus driver got to see an ingenius, inexpensive tool that cost less than a dollar, that perhaps he will be able to share with a family member who cares for someone with autism. My son is on the bus on the way to school, after a four day weekend and two asthma sick days. He is healthy and I am alone in the house, finally, after six days (but who's counting?!!). My husband just sent me a very sweet text message. And with the orange ring on my head and dressed in my fuzzy bathrobe this morning, I got to be among the likes of Professor Trelawney.

Dayton's Legs

My daughter showed this short video for Family Home Evening tonight. It's a must-watch. https://lds.org/youth/video/daytons-legs?lang=eng

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.