48-Hour EEG by Dr. Diane Stein: Day 1

My son made it through the first night wearing the EEG wires glued to his head, leading to a monitor in a small pack on his back, without ripping everything off. He has been wearing boxing gloves and being watched by me, my daughter, or my friend without interruption so we can make sure he keeps everything on and we get a good test. This is the midpoint of my husband's two-week business trip to Europe so I don't know what I'd do without the help of my daughter and friends. Yesterday at Dr. Stein's office my son was so ballistic that it took four of us to hold him still while the technician attached the wires and wrapped his head in gauze. He had very little appetite yesterday and took no supplements, only his prescription meds. It is still very hot and humid and he loved being right in front of the fan. Here is a noteworthy thing: Except for the mega tantrum in the doctor's office, he has had very, very little self-injurious behavior. He has been very peaceful. I think that he really likes the weight of the boxing gloves and the tightness of the gauze around his head and wrapped under his chin. He also likes the undivided attention. I had a really informative phone appointment with Dr. Stein last night. She believes that there are much better seizure meds than Keppra that wouldn't have such mood-altering side effects. I'm so excited to get the data from this EEG and discuss it with her two weeks from now. She is SO thorough, compassionate, and great at explaining things. She was really interested in everything about him and was really excited to hear about the development and talking we are seeing since he started folinic acid. She said that these were the kinds of things other parents have reported. She was also very respectful of the fact that we are using an alternative medicine provider as our autism recovery specialist. A note about this: Since they were gluing things to his head, and I have been well taught by our naturopath that anything that touches the skin enters the body, I asked for samples of each product that I could take to her and have her make homeopathics from them to counteract any toxins. Instead of telling me that this was weird, Brad (Dr. Stein's right-hand man and an epilepsy parent himself) asked me to have her call him and make arrangements for her to make remedies for future patients. He said that there are always a few people who are sensitive to this and giving them this option will allow them to feel O.K. about having an EEG. He said, "Even if it helps only one person, it will be worth it." I slept beside my son last night and he only woke up once, at 4:00am, and was back to sleep by 5:00. He was in a really good mood. Today I will try to see if he wants to eat more--I think the gauze chin strap makes it uncomfortable--and try to get him to take more of his supplements, but the most important thing is to keep the EEG equipment on him. My daughter and I will take turns watching him so I can eat and take a shower, and friends from church are taking him for a walk and a drive from 11:00-2:30. First thing tomorrow morning we can pull everything off his head and wash the glue out of his hair. Since he needs a haircut, anyway, another friend from church and my daughter and I are going to buzz his head. Then we will go to church at 11:00 for the yearly children's program, and hopefully he will feel comfortable going up to the front while a classmate reads his part for him in front of the whole congregation. There will be lots of songs which he usually likes to take part in as well. Tomorrow afternoon I am supposed to call the manager of Dr. Stein's office and tell him when I'm leaving my town so I can meet him.........in the parking lot of the Inn-N-Out in Mission Viejo (!) and return the portable EEG equipment. He says he lives ten minutes from there and likes to do this for the San Diego patients so we don't have to drive to Irvine on Monday morning. This is the kind of personal touch I have come to expect from our naturopath but I have never experienced this kind of treatment from a doctor's office before. Yesterday I almost cried after it was all over, not because it was traumatic, but because everyone was so kind.

Manure

Saturday night I hit a very low point after an exciting and hopeful week. I got the test results that my son has Cerebral Folate Deficiency, which is very good and hopeful news because it's very treatable! I also got all my ducks in a row for new supplements for him from a Compounding Pharmacy, and my insurance is even paying for it. And I had a very uplifting, encouraging, hopeful appointment with my son's naturopath. But along with this I had to deal with some conflict with his new teacher at school, including having to schedule an emergency IEP,  his seemingly non-stop attempts at self-injury, hot, humid weather, a cold for me, and the continuing intense job of his care. On Saturday night, my son did self-injury attempt #41 of the day and I was just DONE. I wondered again if God had forgotten about me. As I did the dishes I sang the hymn, "Where Can I Turn for Peace?" to myself. http://www.youtube.com/watch?v=IyA-r83vtcQ The second time through, I replaced the word, "Gethsemane" with "Humanity." Where can I turn for peace? Where is my solace When other sources cease to make me whole? When with a wounded heart, anger, or malice, I draw myself apart, Searching my soul? Where, when my aching grows, Where, when I languish, Where, in my need to know, where can I run? Where is the quiet hand to calm my anguish? Who, who can understand? He, only One. 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. Text: Emma Lou Thayne, b. 1924. © 1973 IRI Music: Joleen G. Meredith, b. 1935. © 1973 IRI As I walked into the chapel for church the next morning, there was one of my oldest and dearest friends, who I hadn't seen in five years, here on vacation. As I hugged her I sobbed, and as I sat in front of the congregation getting ready to lead the music, I thought about manure. I thought about how I have used lots of manure to get the soil ready for planting in my beautiful vegetable garden, and that frankly, manure is the best stuff for making soil rich. I realized that the manure I have been going through has given me a "broken heart and a contrite spirit", and has made the soil of my heart open and receptive to all of the beautiful growth that God is trying to plant in me.

Autism Yesterday

This is a documentary about five families whose children were recovered biomedically from autism. It is critical of vaccines and traditional pediatricians, which is controversial, but you can't argue with the childrens' recoveries. http://www.autismyesterday.com/trailer.html Autism is treatable.

A Whole-Body Approach to Autism

Video presentation: A Whole-Body Approach to Autism - Martha Herbert, MD, PhD After years of treating patients and analyzing scientific data, prominent Harvard researcher and clinician Dr. Martha Herbert offers a revolutionary new view of autism and a transformative strategy for dealing with it. Autism is not a hardwired impairment programmed into a child's genes and destined to remain fixed forever, as we're often told. Instead, it is the result of a cascade of events, many seemingly minor: perhaps a genetic mutation, some toxic exposures, a stressful birth, a vitamin deficiency, and a series of infections. Rather than dismissing  physical symptoms —diarrhea, anxiety, sensory overload, sleeplessness, immune challenges, and seizures—as coincidental or irrelevant, Dr. Herbert discusses their potential as vital clues to what the underlying problems are, and how to help. http://www.autism.com/index.php/understanding_wholebody

Christ-Centered Healing from Depression

I listen to this talk every once in a while and it is worth a re-listen at least once a year. Profound. http://byutv.org/watch/76dec84f-0d69-4f60-90fd-38cc41bb51aa#!page=3&season=2008

The Power of Food

A very compelling presentation by an MD who cured her MS with diet. A must-watch. http://www.drfranklipman.com/dr-terry-wahls-on-minding-your-mitochondria/

Article on Understanding and Treating Self-Injurious Behavior

http://www.autism.com/index.php/symptoms_self-injury

My Cup Runneth Over

This morning I was cleaning poo off the floor from my son's morning explosion, feeling so much gratitude for how much I am loved. Yesterday I vented to a few friends (see first post from yesterday) and received generous offers of support, help and dinner. I had just finished cleaning the floor and wrapped my foot in a plastic bag (don't ask) when I heard my phone's text message alert. I went to check it right away thinking it could be a time-sensitive appointment cancellation, and it read, "I am at the front door." Huh? In my bathrobed-plastic-bag-footed loveliness, I answered the door, and there was my friend who I mentioned in yesterday's post (the one with neuropathy in her legs)! "How did you know?" I asked her. I had deliberately NOT emailed her because I didn't want to burden her with one more thing. But I had completely forgetten that she reads this blog. (I didn't think anyone was reading it!) So there she was! She said she was going to come over every school morning from 7-8, no ifs, ands, or buts. She smiled about my foot-in-the-bag.  At this point I started weeping in earnest. It is people like this who teach me what it really feels like to be loved by God. http://youtu.be/zq7JPVPz9os Each life that touches ours for good Reflects thine own great mercy, Lord; Thou sendest blessings from above Thru words and deeds of those who love. What greater gift dost thou bestow, What greater goodness can we know Than Christlike friends, whose gentle ways Strengthen our faith, enrich our days. For worthy friends whose lives proclaim Devotion to the Savior's name, Who bless our days with peace and love, We praise thy goodness, Lord, above. By Karen Lynn Davidson

Thank you!

Thanks for the love, friends! I needed to get that out but I was already feeling better by the time I finished writing it. There was a question about why I believe the chance of molestation is 100% in a group home. The answer is that I just read about Carly being molested. It's fresh in my mind and the possibility is unthinkable. I can hire help at home before institutionalization would be a worry. Here is what our naturopath wrote to me. (For people who don't know, she has two children who had an autism diagnosis. Now her daughter is 100% normal and her son is talking and no longer violent.): Your son will continue to make progress. I have been through this. Life gets better. People with autism recover all the time. I hope someday to say, "People with autism lose their diagnoses every day." We can't do it all but we can do what we can. You are doing a great job and a year from now the payoff will be worth it. He may still have a ways to go but you never know. It has only been a few months. It is hard for me to hold back but I pace myself with what I think you can handle based on what you are telling me and how I did it. It is a huge undertaking making food, laundry (3 loads daily I know just for your son); I have been there. Getting supplements in, going to all the different appointments. Pace yourself and hire what you can. You are doing great but you do not need to do it all yourself. I have hired a house cleaner and it is the best $10 ($400) a month spent. It ensures that I do not get burnt out and I do not get angry doing all of the extra work. In addition to your email support I have received an offer of help and dinner by a local friend, and am going to swallow my pride and accept the dinner. I am heading off to do some makeup shopping because I am having a makeover tomorrow! Thanks again for the love!!

Essay About Son Who Learned to Tie Shoes at Age 18

http://nieniedialogues.blogspot.com/2012/04/motherhood-essay-by-camille-ovard.html

A Big Chunk of My Son's Village

Tonight as I was reviewing my day I was thinking about how I had taken care of several matters of "Son Business" but when I started to make a list was rather astounded so decided to share it. Today I had contact by email, phone, text, or in person with the following people related to my son's care and development:

In home supportive services
Diaper service
Podiatrist
Psychiatrist
Pediatrician
Homeopath
Local pharmacy
Online pharmacy
School teacher
Occupational therapist
Teenage helpers

Yup.

Tomorrow I will be phoning MediCal, the adaptive stroller provider, the pediatrician, and the special needs dentist. I will be driving to both the homeopath's and pediatrician's offices to pick something up, and the occupational therapist will be coming over.

I am not writing this to toot my own horn but to help me realize that even though the house needs attention, I got a lot of important things done today.

Tuesday, March 27, 2012: Hopeful and Excited

My son has Spring break this week and I arranged months in advance to have the respite nurse come three times. Today wasn't a nurse day and he was agitated for most of it but there were some wonderful moments and steps made that helped me feel like we're really making progress. I made plans to do several errands in the Target center which has a lot of stores so I could park once and push my son around in the stroller, getting my exercise and not having to transition him much. But as I drove there I had the distinct impression to stop at the pediatrician's first and pick up the lab report for the first set of tests requested by our homeopath.  He got out of the car willingly and walked and ran and was adorable! I picked up the report and my son was so excited to walk around that I took him upstairs to ask the diagnostic lab what special instructions there were for the next set of tests, which included a stool test for H. Pylori. (I had been looking forward to getting this done but was putting it off because I thought it would be inconvenient.) It turns out it will be easy--they just gave me a specimen container to take home. I am so grateful that I felt prompted to stop there because this is another big step on the path! My son enjoyed the stroller ride at the shopping center and I was able to buy a few things at Target, get copies made at Office Depot, look at housewares at Ross, and pick up food for dinner at Stater Brothers. The stores were busy and crowded with a lot of kids on Spring break. Everywhere but at church, kids always stare really obviously at my son and I tried not to let this bother me. I was running his stroller around in figure eights in front of the meat counter while I was waiting for my order and was very conspicuous but tried to remember that I was showing onlookers what a loving mother does. At 4:30 my teenage helpers came to take my son for a walk and at this point I was really ready for a break because he had been fussy for most of the day. When they came back an hour later they said he had been perfectly happy the entire time! I fed him dinner and then at 6:00 his occupational therapist arrived and spent an hour of trampoline-jumping-swinging-singing delight that left me in complete awe at how blessed I am. My son had seen this therapist a few times at the clinic but he had been so agitated that I couldn't handle taking him to the clinic any more so she and his speech therapist arranged to take turns coming to our home! They care so much and want to help him so much. When she left she told my son, "I KNEW the real you was in there!" It was an hour of joy and laughter. It made me realize how true the promise in my Patriarchal Blessing is that I will have "good counselors and leaders" in my life. The list is a very long one, including these wonderful therapists, our homeopath, and our pediatrician. Speaking of the pediatrician, I talked to her on the phone about the lab results and she said we would need to see an endocrinologist about these strange hormone results (elevated prolactin and DHEA-sulfate). I am not in a rush to do this as I know that our homeopath sees the big picture. I am so excited that she insisted on testing him for "every hormone, even the female ones" even though the pediatrician did not see the point of this. I am grateful that the pediatrician went along with it anyway. I am so excited about being a pioneer on this journey that will hopefully help many other children if our pediatrician is open-minded enough to pay attention to these unusual results and how the homeopath is treating them. Our pediatrician also told me that she ordered the test kits for hair and stool analysis from doctorsdata.com that can only be ordered by a doctor, and they are available for pick up at her office. I told her how grateful I am that she is so efficient and willing to support me on this journey. By the way, Sam pooed in the toilet TWICE this afternoon and evening! 1. Happy Dance! 2. Happy Dance! To add to my gratitude list for the day, I got to hear my husband tell his ongoing story of "Jack and the Organic Beanstalk" while we got our son ready for bed. Our son's eyes looked deep into his dad's as he lay there calmly and listened to the story. After that, my husband and I watched the first half of "Bridge on the River Kwai" together while we had ice cream and cake. He loves old war movies and westerns and I actually really enjoyed this one. I went to bed LOOKING FORWARD to my son's ginormous morning poo so I could take samples!! I am grateful that on top of being important, this journey is intellectually interesting. I'm feeling a unique yet familiar sense of excitement. In trying to recall when I'd felt that way before, I realized that this is how I always feel in late pregnancy...when I can't wait to meet my new child.

Loving Words and Thoughts

I am making a conscious effort to say very positive things to my son from now on.

Yesterday in the car my daughter asked me if he had been really good because I was saying such nice things to him, and I said no..... And she said, "Oh, did you have an epiphany?"....

Well, yes. I've been realizing that he must be an extraordinarily pure and noble spirit to have chosen to come to Earth in this limited body that usually doesn't feel good and can't communicate. He has come here to teach the rest of us something, not the other way around.

So I need to look beyond the hitting and the yelling and the head-banging, and see him as the sweet, pure spirit that he is inside. Here are some things I've been saying to him:

"You're such a good boy."

"You're so smart."

"You are so good at eating all kinds of things that are good for you."

"You are so good at taking medicine that will help your body even though it doesn't taste good."

"Thank you for using your voice."

"You're going to feel better soon." (repeated over and over in a soothing voice, instead of yelling at him to stop hitting himself.)

Thursday Morning, January 26, 2012: A Good Cry, or "Just Me and the Angels"

There are many other words I could have used in this morning's subject line, but decided to use more positive ones.

This is the second morning in a row I have been awakened in the wee hours by the sound of my son's head banging on the drywall of his room and shaking the whole house. And been up for an hour afterwards. Yesterday it was 4:30-5:30 and today it was 3:00-4:00. Ohhhhhh joy.

On the plus side, when he was stretching his legs after I took off his soaked double-diaper, he did what to me looked like a full "swords" pattern: not just legs but arms and head as well. It is a reflex that infants are supposed to do naturally so maybe that reflex is kicking in as changes are going on in his brain. I am so grateful that I had that glimmer of hope on Monday, evidence from four independent witnesses that his eyes are improving and therefore the treatments we are doing with him are having an effect.

Meanwhile, back to his sensory-processing-disordered body, the part of him that I deal with every day, let's just say that he was typically awful this morning--what morning isn't these days--but since my sleep was interrupted in the wee hours two days in a row, my emotional and physical reserves are zip. My husband was home and would have been available had he not had a conference call for work at the precise time our son was creating a tidal wave as he had his full-body tantrum in the bathtub.

Since there was no mortal help available, and there usually isn't during the worst times, I tried to remember that the Savior is right beside me walking through this and imagined myself taking a break and letting him do it for a while. Then I wondered if it was healthy to mentally dissociate myself like this, and then I decided I didn't care.

Managing to get him to stand up and to the bed so I could dry him and get his diaper on him and dress him for school, and as his body was full-slamming and his legs were scissor-kicking, I started singing Primary songs and hymns so that I wouldn't give in to my anger.

It worked. By the time I got to "How Firm a Foundation", I was crying in complete submission and desperation, but I wasn't angry.

And somehow, miraculously, he is dressed and on the bus. He looked meaningfully into my eyes and gave the driver sweet smiles as he buckled him in.

"Fear not, I am with thee,
O be not dismayed.
For I am thy God and will still give thee aid.
I'll strengthen thee, help thee, and cause thee to stand,
upheld by my righteous omnipotent hand."

Motherhood is a Choice You Make Every Day...

"[Motherhood] is a choice you make every day, to put someone else's happiness and well-being ahead of your own, to teach the hard lessons, to do the right thing even when you're not sure what the right thing is...and to forgive yourself, over and over again, for doing everything wrong." Donna Ball

Be Still: Using Gospel Principles to Lower Anxiety

Thanks to Betsy for sending me the recommendation for this set of talks on CD. G. Sheldon Martin is a BYU Education Week speaker. I ordered this today!

God's Cake

From my friend, Susan, via facebook: Sometimes we wonder, "What did I do to deserve this?" or "Why did God have to do this to me?" Here is a wonderful explanation! A daughter is telling her mother how everything is going wrong, she's failing algebra, her boyfriend broke up with her and her best friend is moving away. Meanwhile, her mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, "Absolutely, Mom, I love your cake." "Here, have some cooking oil," her mother offers. "Yuck" says her daughter. "How about a couple raw eggs?" "Gross, Mom!" "Would you like some flour then? Or maybe baking soda?" "Mom, those are all yucky!" To which the mother replies: "Yes, all those things seem bad all by themselves but when they are put together in the right way, they make a wonderfully delicious cake! God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful! God is crazy about you. He sends you flowers every spring and a sunrise every morning. Whenever you want to talk, He'll listen. He can live anywhere in the universe, and He chose your heart. Life may not be the party we hoped for, but while we are here we might as well dance!

Tuesday Morning, January 17, 2012: Much Better (He is on the Bus!!)

Weather: Cold, damp, but the sun is out 1. He slept solidly until 6:30am! 2. He did his usual behavioral shenanigans but their intensity and duration was back to normal. 3. He was calm and even smiled during his bath and breakfast. 4. He said, "Mmmmmm" when he wanted more apple. 4. He is on the bus! I can face life again. Thanks for letting me vent last night. :)

Monday, January 16, 2012: Tomorrow Will Be Better

Weather: Cold, damp, rainy I was awakened at 5:30am by the sound of him hitting his head. Went in and put the vibrating toothbrush to his ear with the red helmet and he calmed right down. I slept next to him for about an hour and he stayed asleep with the vibration until 8:00am. His voice sounds hoarse—maybe he is getting sick. Is he reacting to the new vitamin c? Homeopath says that is unlikely. Sand is leaking out of his leg weights and when I touch it my fingertips turn black—probably some toxic substance from China……. Need to discard those and come up with something else. He pooed FOUR times today!! (As of 9pm, that is. The night is still young….) He smiled today while we were riding in the car. He smiled and laughed in the house for one half hour between 5:30 and 6pm. On his mood chart I used the phrase "WILD ANIMAL" (yes, in all caps) to describe his behavior on three separate occasions, all related to poopy diapers. Please, oh, please, I need tomorrow to be better. Please, I need some answers. Please, I need to see some progress. I am trying so hard with these treatments. Please, let him sleep through the night. Please, let him be reasonable getting ready for school tomorrow. Please, let him go to school tomorrow and be healthy and happy and cooperative and the teacher not even think of calling me. I realize that I am lavishly blessed and I don't deserve anything to be better as I have friends with worse trials who are not being relieved. But I pray for relief anyway. I am thankful that I got to see him laugh today. I am thankful that my daughter was home for part of the day, took down the Christmas tree, and got him ready for bed. I am thankful that he is in bed now. I am thankful that my husband was home to help me change the fourth poopy diaper. I am thankful that I was able to get his organic food shopping done with him in his stroller, and that he didn't have a meltdown when we were out. I am thankful that I didn't run into "her" at the store and have to use one of many responses I practiced in case she would criticize me. I'm thankful that I got to have a silly conversation with my daughter during the half hour that he was happy. (I apologized for being "Debbie Downer" and she said, "No, you're Peggy Pessimistic." I'm thankful that I live in a place where normally I get to see the sun almost every day. I think today would have felt not as hard if the sun were out. I'm going to keep being thankful until I'm in a better mood. I'm thankful for public school. I'm thankful that the corn muffins just came out of the oven. I'm thankful that I make the best chocolate chip cookies in history. I'm thankful that I got to go out to a movie with my husband on Saturday night. I'm thankful for butter. OK, that's good. Off to have a hot muffin with butter!

"Being Retarded"

I love this essay. The author is a great writer and I love what she wrote. http://phoebeholmes.com/2011/12/23/being-retarded/

Truth and Lies

The floor is cleaned of poo, the pajamas and bedding are in the washer being double-washed in hot water, my nine-year-old son is diapered, dressed, and sleeping it off in the bedroom, the boogie board (which I used to shield his head as he banged it on the bathtub) is put away, my son's homemade organic-turkey-bacon-brown-rice balls are in the oven, and one of the best chocolate chip cookies on the planet (mine) is in my stomach.

Mornings would certainly be easier if he was potty-trained. He will poo in the toilet if you catch him at the right time, but he gets angry if you try to make him sit there or do anything he doesn't want to do. He seems to go in his diaper between 5:00 and 6:00 in the morning but if I get up that early to take him, then I have to get up even earlier to get myself ready and everything I need to take care of him ready, not to mention how hard it is to get myself to bed early enough in the first place.

Meanwhile, until we can figure this out, we have our morning wrestling match in the bathtub.

Yesterday as I was up to my elbows in this oh-so-fun routine, and full of additional anxieties, it occurred to me that all these thoughts that fuel my anxieties are lies, and that the source of all lies is the adversary, the father of lies.

So why would I want to listen to him?

Think about your anxieties and see if they are based on lies. This is a useful exercise to get yourself out of a pit of negativity and worry.

Lie: The amount of bruises on your son's face are the direct result of your shortcomings as a mother.

Truth: As hard as you try to pad and protect him, you do not have total control of what he chooses to do. He created these latest bruises when he was in the care of someone else, who had the video monitor right in front of her, and your son figured out how to get out of his padding that had been working great for weeks. Actually, the fact that his face was almost clear until this latest incident is a testament to how vigilant you have been.

Lie: His teacher will judge you for these bruises when he goes back to school on Monday.

Truth: He is not judging you. He knows you are an exceptional mother. He is concerned about your son and doesn't want him to be hurt. He is also probably required to phone the parents if a child comes into school bruised. He has seen how tricky your son is, trying to slip in a jab whenever he can, and he has a classroom full of adult helpers. If anyone were to question the situation further, all they have to do is observe your son for an hour (great idea! I will invite CPS to join us for morning bathtime! Maybe they will have some good suggestions!) or talk to his speech therapist, occupational therapist, pediatrician, or psychiatrist, all of whom have seen him in action. With all you are going through, it is too bad that you are worried about being accused of negligence or child abuse. Let go of that draining and unrealistic fear.

Lie: Your husband is judging you for not being organized enough when he is trying to help with your son and is asking you where his stuff is.

Truth: He is simply asking where things are because he wants to help. He is not telling you that you are not doing a good job. He doesn't go through the script that is running through your mind, that you want things to be in order but you are choosing to go to bed earlier so you can deal with your son earlier the next morning. And that you are incredibly frustrated by the state of the house but not much is going to get done until he goes back to school.

Lie: Having your son be home for an extra week of Christmas Vacation was some kind of cruel joke.

Truth: Um, that's pretty much true!.....Well....next week....when he is back in school, I'm sure I will see the point of it. My husband spent more time with him. I took him to see his autism specialist and that was productive. We spent some quality time driving over speed bumps together--at least that made him laugh. And in God's plan, there is a point to everything we go through.

Lie: Because you miss your daughter terribly since she went back to college on Monday, and because she plans to stay for Spring semester, you won't see her again for months.

Truth: That is unlikely. You don't know when you will see her again but that just means you don't know, not that it will be a long time.

Lie: Because you miss your daughter terribly, and cry every day about it, and because your other daughter will be leaving home in less than two years, life is going to get worse and worse.

Truth: There are many joys ahead. You couldn't have anticipated the joy it was to lead the music in church last Sunday while your daughter played the organ, and it happened because she was called to play the organ in her college ward. There are missions, weddings, trips, grandchildren, conversations, and many other joys ahead.

Lie: You are not doing enough for your son.

Truth: Now that is just laughable. Hahahahahahaha. You should probably be doing less for him. You have enlisted a team of specialists, have opened your mind to using alternative medicine, if that could help him, you wake up before six every morning, you design special padding for him that still allows freedom of movement, you are carefully recording this journey so that others can be helped, and email his birthmom monthly so his birth sister can benefit from what you're learning. You also take great pains to maintain your constantly challenged mental health. Hahahahahahaha again!

Lie: Because the respite nurse cancelled yesterday she will cancel today.

Truth: That is unlikely. She knows how disappointed you were yesterday and she will do everything in her power to be here today. And yesterday turned out fine: Your husband stayed home from work so you could keep your appointment and he also took your son out for two hours!

---------

This wonderful article called Truths and Lies is one of my favorites. I haven't read it recently because I didn't want it to influence what the words that were in my head this morning, but now I want to re-read it.

http://lds.org/ensign/2009/10/truths-and-lies?lang=eng&query=truth+lies

Tribute to Special Needs Moms

http://www.youtube.com/watch?feature=player_embedded&v=pFtK0ap95Qo

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.