Friday, December 30, 2011

worth the fight?

It seems there has been more tantrums, more screaming, more kicking. Its hard to know if its part of typical development as a 2 1/2 almost 3 year old, or if it is the autism. Either way, it sucks! He's generally a very happy dude so it makes the rough times such a stark and dark contrast. I know its nothing compared to what some other children and families dealing with ASD go through. Its harder having this my first child too I think. Nothing to compare to. I've been debating going back to the gluten free casein free diet to see if his behaviors improve again. I didn't think it was making a difference but now I wonder. Its just such a huge commitment of time, lifestyle change and money. We still attempt to eliminate dairy products, but we've been lax on that the past month and I'm also wondering if that is the problem. I reintroduced gluten first a few months ago and saw no difference, but then this past month has been harder and that is when we got relaxed with dairy. He doesn't have tons but he has enough and I've also seen a change in his bowel movements. They've gotten worse, back to the way they were before all of the diet work we did. Ugh! 

Then there's this whole thing about getting pregnant and having another baby. My heart longs for it, you know that. But then today when he was screaming his head off I thought, "What if the next one is just like this... Autistic". What if they scream more than Gav does. What if they have more gut problems and actually have intellectual developmental delays, instead of genius in them like Gav does. What am I fighting for? Another child with autism? Is the monthly challenges of infertility and multiple false starts really worth it?" Maybe the negative pregnancy test earlier this week was a blessing? Could it really be? Seriously, I don't know. I don't know how I'd do it. I know I've been armed with much more information and tools to help with behaviors since starting intervention with G, but you just don't know where on the spectrum the child will fall and what their needs will be. Its scary. Do I take the risk? I read in a newsletter again the new statistics that research is finding-- 19% chance that our second will have autism. The other side of that is 81%, but for some reason when spirits are down and I'm deep in the trenches of working through tantrums all I see is 19 PERCENT! 

Add to all of this the endless number of theories and treatment approaches to autism and its mother load of life challenges and its easy to get overwhelmed. Is this behavioral method really the best thing for G?  I'm sticking to my guns, praying that what I'm doing is actually going to help and not hurt him in the long run. It takes sooooooo much strength to listen to your child scream and to "ignore it" and go on happy as a clam trying to redirect their attention. All I want to do is scream back, to yell, "Shut up!" (and sometimes I do). Oh, and just in case you were wondering, it doesn't help! Duh! Redirection and extinction do help, sometimes it takes a while (probably 5 minutes on average, which seems like an E-T-E-R-N-I-T-Y) before G is back to himself, but I'd say 100% of the time if I do my part to redirect and I don't give up he comes around eventually and his happy little self returns. 

It's quiet now. He didn't want to part with his 18-wheeler for his nap, but he wouldn't go to sleep with it, he just kept talking and playing. I offered a trade, but he lost it. That one wasn't so bad. He must have succumbed to dreamland. Oh how I'm grateful he sleeps well, something most with autism don't do. 

So, I guess I have some more soul searching to do. Definitely some fasting and praying, trusting in the Lord's plan. There isn't much more I guess I can really do than to strengthen my faith and turn the rest over to Him-- Thy will be done. 

The screaming has returned. I spoke too soon. I'm off to comfort the weary.

Wednesday, December 21, 2011

on my mind: stand-ins

stand-in (stndn)
1. One who substitutes for an actor while the lights and camera are adjusted or during hazardous action.
2. A substitute.

So I've been thinking. I've been thinking about spiritual stand-ins. During the past year I've experienced a lot of challenges. I've also had friends and family experience challenges. Its part of life. In attempting to understand the "why" of my own personal tragedies I came to learn that if allowed, the Lord has lessons to teach us through these challenges. I've come to realize that these challenges and adversities allow my Savior to take his teaching role in my life and help to mold me spiritually. Learning this has caused me to have more gratitude for challenges (I still have my moments of hating them of course, I'M HUMAN!). I seem to have more faith that I will be able to get through them with my Savior and that I can be a better person because of them. I'll admit that I would have loved to had someone come and sweep me away, out of those miserable moments, those times when I just couldn't take it anymore, when I just couldn't see the light ahead. Shoot I'd love to have all of my challenges taken away this very instant, but I know better--1. that will never happen; 2. I know its for my eternal good!

I'm sure you'll all agree with me, we all want that someone to make everything alright and for all the bad to just go away.

This got me thinking. Do we not as mothers do that for our children? Do we attempt to make all the bad stuff go away? Maybe its how its meant to be, but because of what I've learned about challenges and the Savior's ability to succor and to comfort and all that it has taught me about the atonement and turning to my Savior (because I didn't have someone there to make the bad stuff go away), it causes me to wonder. I wonder whether or not we can actually become stand-in's for the Savior when he is the only real source of peace, comfort, and the only one able to save. In our attempts to love and free our children and others from pain and suffering do we actually neglect and lose out on opportunities to teach them of the power of the atonement and to help them develop a relationship with their Savior? Do we attempt to make all of the bad go away and thus rid them of the need for the Savior? Do we prevent circumstances that would otherwise require bended knees and humility before the Lord?

Earlier this year our son received a priesthood blessing just prior to his ADOS evaluation to determine a diagnosis of Autism. In the blessing, the Lord blessed our son that he would be able to use the atonement to rise above challenges. I've thought a lot about that promise and realized my role in helping to teach Gavin the power of the atonement. It wasn't until my adult years that I began to understand the atonement as a source of peace and comfort to pains and sorrows. It had always been viewed as a mechanism for forgiveness of sin. I had never understood the underlying foundation of the atonement, perfect (complete) love.

At the age of 2, Gavin has already had to do many hard things. There have been countless moments when I've wanted to quit it all. I've wanted to just embrace the happy boy that our son is, avoid his challenges, and forget the therapies. He will have even harder things ahead. I sometimes think about the days ahead and fear when his autistic characteristics in his speech and social behavior will turn from cute now, to odd and different which will lead other children to tease him and not want to be his friend. I hope and pray that I fear the worst, but of course I want nothing more than to prevent those moments from ever happening. But, I can't. There will most likely always be noticeable differences and even typically developing children generally always experience social insecurities, bullying, and the likes. Shoot! I was nicknamed "Stacy O'Smell" my freshman year by the boys in biology class and was constantly teased by the girls on my sports teams through high school. Its inevitable. Looking back, I didn't have a parent rushing in to make things better, I didn't even tell my parents, but if I had understood the atonement more and the power of my Savior to help me through those moments, I could have grown from them, instead of becoming more and more insecure and hating high school when it came to social relationships.

Its as if our relationship with the Savior is built on experience after experience of turning to him so that he in turn can come to our aid--"And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities" (Alma 7:12). In this text succor means to "run to". So he has suffered that he might be able to run to us. I love the imagery those words invoke in my mind. I imagine the Savior dropping everything he is doing to attend personally to my needs and rushing to my side. And I know that he does the same for my son as we continually witness miracles in his life during the past year. Each small moment develops and adds to a foundation of faith in Jesus Christ, in His atonement, and in His Gospel.

To realize that even Lehi, a prophet of God, couldn't prevent his sons from dissenting or from the problems they caused Nephi, gives me much perspective about my role as a parent. The Lord doesn't prevent much of life's heartache and sorrow because agency plays such a significant role in His plan of happiness. He understands that it is our agency that allows us to choose to turn to Him and to experience the bitter and the sweet. In electing ourselves stand-in's for the Savior in succoring our children (old and young), they miss out on vital spiritual life lessons.

We have to teach them to believe. They come to earth innocent and full of faith, but the world quickly pollutes that innocence and if we are not there to help them establish from a very young age a foundation of faith in Jesus Christ and his atonement and help that childlike faith to blossom when they are young, our children will seek happiness in places other than the Savior and His gospel. He will not be their refuge from the storms of life. The prophets and apostles of our time have continuously been promising us that if we will do the "small and simple things" individually and as a family consistently and deliberately, then we will be greatly blessed! Our children will be more prepared to witness for themselves the power of atonement in their times of need and we will have more faith in our Savior and a greater ability to be sensitive to the Holy Ghost and those teaching moments and times when we need to hold off from jumping in to rescue our children and instead help them in opening their arms to the Savior, who will undoubtedly run to their side! Each experience adds to their reservoir of faith and testimony in the reality of the living Savior and prepares them for challenges ahead as they will undoubtedly come.

* Please realize I don't mean that you should allow your toddler child to touch a hot stove or run into a busy street, nor am I saying that we should not attempt to prevent our children from making big mistakes. This is merely a representation of some of my observations of life and relationships, as well as, food for thought and discussion on the significance of the Savior and His atonement in our lives and the lives of our family.

Thursday, December 15, 2011

If you only knew...

Please excuse the extremely long post, but Ryan and I agreed it was important to document this year and everything our family has been through as a sort of family history and reminder of the lessons learned.

After reading a friend's look back at 2011 of her life via blog, I decided to take a look back at what I had posted throughout the year. It being a very challenging year, I wondered how much of it I had actually documented. I wondered what my perspective had been and feelings I'd felt throughout the year that had been softened by perspective and growth. I knew there had been months of silence. The first month, January, I only posted once, here. As I read, I couldn't help but say to myself, "If you only knew then what you would endure this year." I would have never imagined such a year up for myself, but now looking back its been a trying but wonderful year!

January - Gavin received his results from his developmental delay intake and was approved for the intensive early intervention program through Parent Infant Programs (PIP). He started the intensive 5 days a week program the end of January.

We also found out we were finally pregnant with baby #2! We were excited!

February - Gavin was evaluated and approved for Occupational Therapy (OT) once a week to address his gross and fine motor developmental delays and his sensory integration delays.

Our excitement about baby #2 quickly came to a disappointing end when I started experiencing horrific cramping and pain and was diagnosed with an ectopic pregnancy, go here and here for the details and recovery.

March - Gavin began OT with a wonderful therapist who has come to love G as one of her own children I believe. She has been so good to us! I have prayed that his therapists and interventionists would grow to love him and be inspired to provide the best care they have and she is definitely one of the many answers to those prayers. Gavin also was evaluated for and started Speech Therapy.

He still had no speech, maybe after being prompted he would say single words. I honestly can't remember.

Ryan left for his clinical residency in Austin, Texas for 9 weeks and G and I stayed home. It was a rough start but after the first week it was amazing how much the Lord blessed us. I honestly thrived during that time and was really happy!

April - Ryan was gone. I made 2 trips to Austin to see him and my family took care of G so I could go solo. They ended up being awesome times for us to be together alone and have fun making memories.

Gavin increased speech therapy to 2 days a week instead of one and we reduced intervention to 4 because our schedule was too crazy.

A tender mercy from the Lord occurred and G's nasal problems with speech went away almost overnight and his speech has grown like crazy since that day. We started realizing his receptive language skills were much better than we realized and his expressive has blossomed since then!

May - Ryan came home the end of the month. G was a completely different kid! Miracles happening! Ryan passed the clinical portion and found out he would be able to take his oral exams in November 2011 rather than waiting until October 2012 like we thought. Although exciting this meant he had to get right to work studying after being gone 9 weeks. Another grueling 5 months and then hopefully we'd be done with the diploma portion of McKenzie and all seriously hard schooling for a while (cross my fingers).

June - Job offer resurfaced with Eugene, Oregon PT clinic. Ryan started discussing details and offer. We had a great summer and lots of fun weekends hanging around home and our parents pools. We made one trip to Santa Cruz with G and Ryan's parents. Love that place. It may be our last trip in a while, sad.

July - ? Must have been pretty normal thank goodness!

August - we received the date for G's medical evaluation by Dr. Lisa Benaron - September 13th. I was busy reading books and research articles on autism to get a better understanding about the disorder and to figure out where G was at on the spectrum. I read Dr. Benaron's book before the exam to really wrap my head around it and intellectually and emotionally prepare myself for the diagnosis.

We accepted the job in Oregon and schedule a interview/meeting with the Corporate office in Texas.

September - I turned 30. I'm excited for my 30's! We found out were were pregnant (I took 3 different tests to confirm, even different brands) with baby #3 (#2, attempt #2). I started bleeding and we had blood work done to see if I had miscarried. The day we flew to Texas for our interview for the Oregon job I took a pregnancy test again and it was negative, confirming my fears I had miscarried. We had the interview in Texas and details about the Oregon job that we hadn't be given previously shook us up some and had us worried maybe we'd made the wrong decision (also let me note that Ryan had given notice to his employer which we hadn't planned on doing until after the contract was signed, but circumstance kind of forced it on him. So, when problems seemed to have arisen with the Oregon job I was terrified because we weren't guaranteed his current job here anymore). Then the next day after flying home we had G's autism evaluation and he was diagnosed with classic autism. The worst news being that we had a higher than expected chance of having another child with autism, up to 40% chance depending on how much genetics was playing a part.

We hit rock bottom emotionally, but quickly the Lord picked us up and I felt at peace and true happiness despite how bumpy the road. Within a 5 day period we had found out I was pregnant and then I miscarried, we had to reconsider the job offer in Oregon, G was diagnosed with Autism and we would have to accept that we may very well have another child (or children) with Autism or seek out adoption.

October - Ryan and I celebrated our 5 year wedding anniversary. Every year gets better! Its helps when year 1 was pretty dang rough. We are grateful and laugh about it now!

General Conference was a huge boost for me. I love receiving counsel and words from our prophets and apostles.

For Halloween, Ryan was a volcano, Stacy a Cave Woman and G a dinosaur. G loves volcanoes so Ryan suggested the prehistoric theme.

November - Final push to exam time for Ryan's oral exams for MDT. He traveled to St. Louis, Missouri for the exams. No more studying but now it was full of worrying whether he passed or not with such a low pass rate. The exam wasn't without bumps in the road-- radiator problems on way to airport to fly to test and almost missed his flight. Ryan missed his connecting flight on the way home and had to spend the night in the airport and lucked out getting a another flight the next day (it was Veteran's Day weekend and a Monday) and then had to have the car towed home from the airport in Sacramento.

I remember after this weekend saying to Ryan something like, "I prayed that you'd travel safe and without delay, but I guess my prayers just weren't answered." As I was thinking back about how there were several bumps in the road that seemed so frustrating at the time during this weekend I realized now that although I wanted a seamless weekend for Ryan's travels, if the Lord had granted that then I probably wouldn't have been as grateful or apt to recognize what he did bless me with. Without challenges be them small or large it is so easy to forget the Lord and think that our success is because of our own strength or due to coincidence.

That weekend I was grateful that we had AAA plus and that it was only 93 miles to home instead of over 100 so that it didn't cost us a penny to tow the car home. It made me every so grateful that somehow Ryan's mom was able to find a $350 ticket to get Ryan home after missing his flight rather than the $1000-2000 tickets we were quoted on the phone and initially seeing online. It made me realize that the Lord did in fact know the limit to what we could handle and gave us just enough to humble us and help us turn once more to Him.

I was finally able to put aside my fears and we signed the contract and officially accepted the Oregon job. Since signing the contract all of the anxiety and fear that had taken over me has been gone. It feels so good to have that decision made and to press forward now. Another testament to the power of the Lord's holy priesthood.

Thanksgiving was great and we ran our first 5k. I intended on doing a mix of running and walking but ended up running the entire thing, pushing the double jogger stroller too! I've since started running about 3 miles on at least a weekly basis. It feels so good. I never imagined I'd say that! We agreed to make it a family tradition to do Turkey Trots each year on thanksgiving. We are considering training for a 10k! Eugene is full of races each month of the year! Its a runner's paradise.

December - After just short of a month of waiting on pins and needles, we finally got news that Ryan had passed his oral exams and completed the diploma program. Ryan S. Beck, DPT, Dip.MDT (oh ya!). What a huge blessing from the Lord! The pass rate we had been told was around 50% so this was a HUGE blessing!!!!

If I'd only known.... Honestly I think there is wisdom in NOT knowing. Would I have signed up for the kind of year I had. My first response, NO, HECK NO! But then slowly and surely, the Lord has blessed me with more understanding about who I am and my potential and how all of these challenges are indeed experiences that will be for my good.

This year truly has been a testament to the truthfulness of the gospel of Jesus Christ and the words of his scriptures, especially the Book of Mormon. Line upon line, he has given me just enough to challenge me and humble me to turn closer to him. What I didn't detail above is how much my testimony has grown. I have felt it in my life--stronger faith and more willingness to obey. I have more of a desire to share my testimony and express gratitude. I realized that this desire to express it comes in my life when I am living the gospel more fully and when my testimony is growing, but that those desires don't come when I am not actively living the gospel and striving to grow and improve. I have struggled all my life to read my scriptures and this year because of a true gift from the Lord (a very sacred moment in my spiritual lifetime I have no doubt), I have consistently read the Book of Mormon daily for the majority of the year. I read the entire Book of Mormon and have been able to read and spiritually experience for myself the power of that witness and the truth and safety that lies in follow its counsel. I have now more than ever instituted sincere prayer into my life as a result of being humbled and knowing that in order to accept and embrace the world of Autism that I needed the Lord. That challenge turned me even closer to God. It still has to be a conscious decision everyday to keep doing it and to do it with a sincere heart and effort but I have felt the power it has had in my life and I know that true happiness and peace are possible and only come through doing the small and simple things the prophets and Lord have commanded us to do.

In January I posted that the pending news of G's developmental delays was a challenge I didn't know if I could handle. Had I known then all that would actually occur I probably would have totally lost it, but the Lord prepared me throughout the year to be able to faithfully endure and actually grow through the challenges.

My goal as a result of this year is to strive to always remember God and my dependence on him for happiness. The Book of Mormon is a true testament of the joy and happiness that can come through always remembering Christ. It is also a testament to the misery and destruction that will come from forgetting God and relying on our own strength. I choose to remember Christ and to honor the covenants I have made with Him!

And because of what I know now and have experienced this year, I am choosing to continue on to what could be another challenging year but also has the potential to be more beautiful than I can imagine! Faith and hope in the Lord's promised blessings are powerful!

Tuesday, December 13, 2011

to the moon and back!

I came across this image on pinterest. G is obsessed with the moon lately. Forever he's had an obsession with the sun, well, not the actual sun but with shapes and images that resemble the sun. If it is circular with lines of any form coming from it, he would exclaim it was a sun. Well, now he is obsessed with looking at the moon and stars. Whenever we are outside or driving in the car at night he can't help but point out the moon and get excited. His favorite song has continuously been "Twinkle, twinkle Little Star". Well, when I saw the image above I thought of him. I decided it'd be perfect in a gallery wall for G's room when we move to Oregon. I couldn't find the original source, so I decided to create my own version. I decided it needed to look like a chalkboard so I googled how to create a chalkboard layer in photoshop elements and here is what I came up with. What do you think? Now to have it printed. The image is 20x20 inches. Its been a while since I've created anything in photoshop. I should give it a go at digital scrapbooking again!

It could still use some tweaks. I'm going to stew over it for a while. Maybe more layers of brush work. I also couldn't find a font I really loved for it. I may have to download some new ones. Hum... That being said I really do love that little dude to the moon and back!

POST EDIT: Here's another go at it based on your feedback and time...

I increased the transparancy of the layers and added an additional layer too. I also toned down the opacity of the words. Better?