Wednesday, March 20, 2013

Two sides

A few days after Matthew's diagnosis, I was moderating an event for work.  The speaker was a man named Aman.  I have seen a thousand web events and we have hosted some of the most incredible speakers in the world on our platform.  I'm so lucky because often times, I forget I'm working and get lost in the content.  Well, this was one of those presentations.  There was something he said that stuck with me that I want to share because it has guided my thoughts and behavior over the past two weeks.

He was talking about the fact that we are a world mired in the idea that we need answers--we search for answers.  The ultimate quest is to find answers.  He suggested that is a paradigm that we need to shift and realize that the power comes not necessarily in the answers, but in learning to ask the right questions.  My take on it--we cannot ask a question that is beyond our circle of knowledge.  We can only ask those that are right on the outside edge of that circle.  As our knowledge expands, we are able to ask better, deeper, more profound, searching questions.  And our circle of knowledge will continue to expand as we do so.  It stops when we think we get to answers.

He also suggested that there are two sides to everything--more than one way of looking at everything (like two sides to a coin--completely different, opposite each other, but both part of the same coin).  Again, my take on it--as we ask questions and start to understand both sides of the coin, we are better equipped to make good decisions.

This made me think about my quest to get answers about Matthew's diagnosis.  I wanted to put a label on it for the sake of understanding and so that I knew how to deal with it.  But I realize that I will be able to learn even more if I focus more on asking the right questions.  An example of that is the question that we were asked on every eval, but that I always struggled a little bit to answer--what are Matthew's strengths?  The more time I spend focusing on those types of questions, the more progress I believe we will make in understanding and bonding with our son which is the ultimate goal for us.

Well, after the event, he and my Dad (one of my business partners) spent some time on the phone.  Aman had mentioned that even autism has a great side--society seems to think of it as a bad thing, but with it comes incredibly good things.  My Dad asked him to explain further what he meant by that.  In response, he shared a story with my Dad.  Well, the camera was still rolling.  With his permission, I share that story.  Sorry about the video being so skewed--it was recorded in widescreen.

Sunday, March 17, 2013

French Fries!!!

This week has been an EPIC speech week, but behavior wise, we've had our good and bad days.

Matthew has started to imitate words.  To us, that is one of the greatest victories we could have.  At one point, our developmental pediatrician told us that, if we could get Matthew to start imitating language, we'd be in great shape.  We have has begun.  I'm doing a not-so-pretty dance of joy over that.

Example--this week, we were driving in the car and I had just been a bad Mom and snagged a little Burgerville (with their gluten free bun--gotta love it when fast food accommodates our special diet).  The kids were in the backseat starving because I had waited too long to feed them.  Matthew starts yelling at me for "french fry! french fry!"  I loved it!  I was giddy the whole way home and gave him one at a time so I could hear him yell it at me a zillion times.

We are potty training Adi and talking about "pee" and "poop" a lot, so Matthew also talks about that a lot....but he TALKS!  He echos those terms frequently and even follows us to the potty more often than before to do his own business.  Nice how some of the first phrases my kids echo deal with our favorite topics, eh?  "Toot" is also among his favorite terms.  And he uses those spontaneously.  Gross, but they are words!!!  We'll take 'em!  As part of this process, we bribe Adi with her favorite treat--gum.  Matthew busted out with an "I want gum" the other day as well.  Count them people...THREE WORDS.  Rock on, my little man!

Now, behavior wise, we haven't had the most epic week--good and bad days.  The good ones have been really good though....which is wonderful!  However, the bad ones have been pretty nasty.  Lots of flailing, wrestling, running in circles around me, not wanting to walk with me (translate: bolting), etc.  He is doing something new that really has Todd and I concerned...and makes him look a bit more "different."  He plays with his ears a lot. He zones out a bit and grabs his ears.  I almost feel like we are looking at this behavior and inclined to label it stimming (sp??) because of his diagnosis.  I'm not sure that's what it is, but I also don't want to be naive and ignore it.  So I've talked to his therapists about it and asked what the appropriate response it, especially if it is a stimming habit, and we are responding as they instructed (not drawing attention to the behavior and talking about it, but rather interfering with it and redirecting, if that makes sense).

Another challenge is that Matthew seems to want whatever Adi has.  And he is not gentle about it.  You can imagine just how well this goes over in church.  We are the people no one wants to sit by.  Actually, let me take that back.  We are the people that those who want to be entertained seek out to sit by, but those who actually want to pay attention avoid.  We were in another ward this week and Adi and Matthew were going at it like cats and dogs--grabbing stuff from each other and SCREAMING when things were taken from them. Adi got so mad at Matthew that she yanked the hair of the person in front of us. Not quite sure why her anger was redirected that way, but you can imagine how well that went over.  Ah, the joys.

Matthew gives kisses now....that's another victory.  Onward and upward.  I'm tired after this week, I admit.  Todd and I have been so insanely busy (and I've had no phone to speak of because Matthew bit through my already-cracked screen which he had chucked onto the cement floor of the dr's office), so I feel like I need a little recharge so that we are able to get through the next week, but I'm certainly celebrating because we have had lot of little victories!!!

Sunday, March 10, 2013

A Peek at Purpose (FYI--Religious Post)

I think that at times in our lives we are given glimpses of the profound and those little moments help sustain us and represent some of the most incredible learnings of our lives.  I kind of feel like our recent experiences with Matthew will be/are a proving ground for me--an opportunity to really understand some of those insights that I have always considered most personally impactful.  Today, as I've reflected on this week (and I admit, I've been a bit more emotional and introspective than normal), there are three insights that I'm SUPER grateful for, but realize I'm staring at my testimony with the phrase "to know and not to do is really not to know" running through my head.  I've gotta show I believe some of those treasured insights now.

The first insight came while I was on a business trip with Stephen Covey.  We were in Paris, France in a little cafe and he seemed nervous (Stephen does not get nervous).  And serious....another uncharacteristic trait.  (Side note:  he used to always taunt me with things like "do you want crazy or boring?" to try and get me to be more "fun" on our he certainly wasn't known for being serious when we weren't working).   Anyway, he told me that he had been praying about something and wanted to make sure that he shared it with me in a way that I would understand and not take offense to.  I had been dating this dude that I knew I shouldn't marry and I had shared with Stephen some of my thoughts and concerns.  In response to those conversations, I think he felt like he needed to be sensitive in the way he approached our little chat.  I had been trying to "force" my relationship with this guy to be right--trying to change the things about it that weren't working, including things about him that I thought needed to be different.  I really wanted to be married and start a family (I was 29 at the time...about to turn 30) and almost felt scared that it was never going to happen.  The gist of what Stephen shared with me that day was this....there is a big difference between being faithful and being full of faith.  Being faithful means that we are doing the right things--usually for the right reasons.  Being faithful isn't something I struggle with.  I like going to church, throwing myself into callings, making good things happen.  Stephen said that I almost have a disease brought on at his encouraging.  I am ( longer is this part true) arrogant enough to believe that I can fix anything through R&I--Resourcefulness and Initiative.  He'd always say, when we were faced with the impossible, "make it happen, Jewels.  R&I."  And I'd figure out a way!  Well, life, unlike business and most of the circumstances we found ourselves in, isn't actually controlled by those who have R&I.  The "higher law" of faith, if you will, is to sometimes just sit back...and do nothing.  Let God work the miracles.  It's almost like we are sometimes arrogant enough to think we can work them ourselves--making mountains move through our own effort rather than recognizing that it is the power of our loving Father than makes the miracles happen.  My Matthew is the ultimate test of my R&I.  Just two days ago, for example, we were on a bike ride and he wanted to go up the hill...there was a busy street at the top of said hill and I wanted him to turn and go the other way.  After an epic tantrum, I got creative and attempted to ride the tricycle myself and sprawl his body across me to get him down the hill, given that he literally had plastered himself to the ground in protest when I tried to get him to turn around and ride himself.  I got head-butted and almost ran both of us into the sticker bushes.  He ended up, during the course of our trek home, wandering into a ravine, throwing about 7 more tantrums that would put any 2-yr old to shame and making life very difficult for his other two siblings who were trying to ride along with us. R&I does NOT work with Matthew.  I cannot control, fix, or even change my son through all the effort in the world.  I almost have to just sit back and let God work the miracles for him.  I cannot create Matthew miracles.

The second came, again, at the hand of Mr. SRC.  He gave me a talk by Elder David A. Bednar called "In the Strength of the Lord" and told me it was one of the best talks he had ever read.  We were in FL at the time and actually had a free morning.  Our rooms were adjoining and we opened the door, he wandered in and set the talk on my desk having just finished it.  He then went back into his room and started doing yoga and calling out the names of the poses as he did.  In the middle of all of that distraction, I attempted to read this talk for the first time.  I eventually gave up and joined him in saluting the sun and cobra poses.  But I went back to that talk...probably a dozen or more times.  The main point of several that keeps coming back to me now is that, through and because of our Savior's atonement, we can be given strength beyond our own in times of need.  We tend to ask for what we want (our will) in our moments of desperation--ask for some difficult thing to be be taken away or somehow made better.  Rather, sometimes the burden/trial/experience is exactly what we need to become better people.  So instead of being removed from it, why not ask for the strength to endure it well--strength that we know is beyond our own capacity.  Through faith (if we are full of faith) we can be given that strength.  Matthew requires that of me.  There are mornings when I wake up with dread because I don't know if I literally have the energy to get him dressed (if you've ever witnessed the battle that can be, you'd appreciate why I say that).  Or there are days when I realize that my patience is completely spent and I cannot have him pee in the middle of the floor, bang another cupboard, rip another book, make another mess, pull his sister's hair, or find another destructive activity and not completely lose it on him and call CPS on myself.  Those are the days when I pray for "patience beyond my own."  With this new diagnosis, I still want to pray for him to be healed--for this burden to be removed because that is what it feels like right this second...a forever burden. Rather, I am going to try to pray for strength beyond my own so that I can learn what I need to from this.  If this is Matthew's protection in life, Liam and Adi's gift to help them be more tolerant and loving towards others, who am I to pray that they be deprived of any of those blessings?  And how sad if Todd and I miss out on the gift that this amazingly charming, though incredible challenging, child is in our lives because we are so focused on changing our circumstances.

The third just came yesterday when Todd was talking about another talk by Elder Bednar that he recently heard ("That We Might 'Not...Shrink'"), the gist of which was almost a summary of my first two learnings.  There are times in our lives where we will pray for miracles--the miracle of healing, being one incident.  Our responsibility isn't to dictate the outcome, but to believe that God has the power to heal.  Having that faith is SO HARD because it requires us to let go of the outcome part--to recognize that His will prevails in all cases.  And whether or not our "wills" align, we need to know, as in really KNOW, that He has that capacity.  How hard is it to believe that and then be deprived of that healing?  How do you keep the faith under those circumstances?  That is almost the definition, however, of being full of faith....letting him work the miracles according to His will.  That's almost the higher high law.  My Matthew might not be healed, but I know that God COULD make him talk....make him whole....make him perfect.  He might, or He might not.  Regardless, I believe He can.  Whether or not He does is almost irrelevant at this point, even though that is absolutely my will.  What I need to do is work on my faith so that I am strong enough to know that and believe that....and to do that.  To know and not to do.....right?

Saturday, March 9, 2013

The People in our Path

It was very liberating for me to admit to Todd the other day that I just don't like being Matthew's therapist.  I just want to be his Mom.  I can be a Mom-apist, but straight therapy stresses me out. 

About 6 months ago, Todd and I started going to Medford, OR to work with a group called the REACH Family Institute.  They focus on brain development under the theory that the brain has plasticity and can change in structure to meet functional needs--as you use it, like a muscle, areas of your brain can literally make new connections.  They believe that you focus on a child's potential--never on their label--and build on their strengths. They developed a program customized for Matthew that requires us to work with him for about 2.5 hours a day to strengthen his brain (includes sensory stuff, vestibular exercises, an intellectual program, etc.).  

Todd and I decided that we needed to hire someone to help us with this program because I am a therapy wuss!  I want to say I rock at it, connect with Matthew and he's so cooperative, but I end up with bruises when the therapy swing clobbers me in the shin or Matthew kicks me in the face when I try to get him to crawl through the tubes.  Admittedly, I get frustrated when he isn't cooperative and a little bored doing the same thing over and over.  Horrible, but it's how I feel. 

We had a glorious "helper" (Haley) who was Matthew's therapy angel for several months, but in Jan, when she went back to school, we had to hunt for someone new. A sweet, stunningly beautiful, articulate, driven, talented, personable 21 year old landed in our lap--Haley introduced us to her.  I thought for sure she would consider this job torture and thought she might be too cute to endure some of the abuse (not sure why those two things were connected in my brain) .  But she is a personal trainer, so I figured she'd be tough enough to at least defend herself against his occasional aggression.  

She has thrived.  Matthew adores her, cooperates, and even calls her by name now--Aubrey (Au-ree!).  Well, after my blog post, she wrote me the most incredible note and I was so touched by her perspective that I asked her permission to share her story.  I had NO IDEA we had found someone with such perfect empathy and wept as I read what she shared.  

Julie, first off I want to thank you for letting me into your home. You were an answer to my prayer, I needed a job every week for just a few hours to help me hit my goal of saving more money. So the first time I met your family I fell I love! All your kids are adorable and you were so friendly your house is beautiful I knew I was going to say yes. Then the first session of Therapy came with Matthew and I thought, "holy cow! This is more then what I signed up for" and I wanted to tell you I just could not do it, I just couldn't. But I had such a love for him! And I was quickly reminded how hard it was for me growing up. I grew up with many "Labels." I am dyslexic  ADD, Hypoglycemic and when I was much younger I had Anger management issues just to top it off.  I was labeled just like Mathew and it was hard to deal with, but because of the love of my mother, I knew I was loved and could do anything. When people would me call me dumb stupid or not want to be my partner in the group assignment because I know I couldn't fully do it because it was to hard, I would come home and cry. I was always being pulled out of class to go to the "special needs" room. I was never able to get off an IEP and I was in a class where I never belonged. they put me in classes with kids that had severe anger management issues, speech therapy, even severe cases of Down's syndrome. they clumped us together as the issues kids. But because of the struggle, because of all the crying on my moms shoulder, screaming because I didn't want to go to school, I have a love for anyone who is "different." I see people through different eyes and have been blessed with the ability to love everyone, no matter what challenge or circumstance in life. I have a firm and unmovable testimony that our Heavenly Father does answer prayers, that He would not give us a challenge that we cannot handle and cannot overcome, even if that means never truly overcoming it. Heavenly Father always put people in my life that could help me at school, that could help me at church. He will do the same for Matthew.  The main reason why I know these things it's because my mother knew it. My mother knew I wasn't stupid. My mother knew I wasn't lazy and I mother knew I had potential. My mother could see the little improvements. My mother never yelled at me because I was not understanding fast enough. She never thought I was anything less. She never treated me any different and never threw the label at me. You remind me of my mom. Just like her, you embrace Matthew, you love him, play with him and rejoice in his improvements. The world sucks and is mean. They will make him feel dumb, different, slow and the person they don't want to be a partner with. But because of you and your love, like my mothers, he will know he is loved, that he is special in a good way. He will know that you view him as the greatest blessing in your life and even if others can't rejoice in his small progress, he knows that you can. My mother couldn't protect me from the world, but what she could do is make the home a safe-haven--a place where I belonged and a place where we could rejoice in my small achievements. She also gave me the confidence to never listen to what others are never let it sink in and to never let life get you down. Matthew is so lucky to get the blessing of growing up in your home where you will do the same and already are. Thank you for letting me work with him, I love it!! Even when it's hard I know that I am where I am because others didn't give up on me and I will never give up on him.

For any Mom who wonders if their role is important, please remember that there are times when we are the only person who believes in, supports, and recognizes the worth and potential of our children.  We cannot fail to communicate that to them.  

I believe in my Matthew.  I can only pray that someday Matthew reflects on this time in his life and, like Aubrey, sees the consistency of our confidence, love and belief in him.

Wednesday, March 6, 2013

Everything changed

Today I feel like everything changed for our family...and yet nothing is different.  

We have been blessed with a son who is our teacher--he teaches us patience, parental wrestling, to have cat-like-reflexes in order to protect our other children, ultimate child-proofing methods, to tolerate the worst poop disasters known to man, and a variety of other skills which have been painful to learn, quite literally as we have endured bumps and bruises at his hand (and foot...and fingernails...and noggin). However, he has also taught us some of the most important lessons in life--to love unconditionally, to refrain from judging, to look for the best in others, and (most importantly) to rejoice in the small victories. Thus, I decided it was time to start a blog--to give myself the extra motivation to look for the small victories (because we find what we are looking for) and a way to track them so I recognize the big, though sometimes gradual, miracles we are blessed to experience. So here we are.  

Now, this is a REALLY hard post for me to write because it requires total vulnerability and I crave control. Todd and I have been working for several years with doctors, specialists, therapists, and educators in an attempt to better understand our son, Matthew (who turns 5 in May). At about 15 months, we started to recognize some developmental delays and, as he got older, these delays became more and more apparent. At about 3 1/2, Matthew was diagnosed with Global Developmental delays, Sensory Processing Disorder (SPD), and, at almost 4, with developmental apraxia (a motor delay related to speech ). He has made only minor improvements in speech over the years, making his delay more pronounced as he gets older. In recent months, however, we have discovered some new therapies (REACH Family Institute), natural interventions (Dr. John Green), a fabulous new therapist (Building Bridges) and things feel like they have started rolling. We have been very encouraged and celebrating the series of small victories we have witnessed.  

As of late, however, we have been meeting with a new developmental pediatrician and, after several eval appointments, we sat with her earlier today for the "big reveal."  I was bracing myself, knowing in my heart exactly what she was going to say, but I was apparently still ill-prepared, evidenced by the fact that I am sitting in front of a computer while the whole house is asleep bawling my eyes out.  I've been praying my guts out for the last little while, but still can't quite seem to get a grip.  I feel like I lost something today.  

So, Matthew has ASD--Autism Spectrum Disorder.  It's a label that I have dreaded.  I have taken such hope in the fact that no clinician to date has felt to even dig into the possibility that he is autistic.  But this new lady, Dr. Alderman, specializes in this stuff and declared that he "passed with flying colors" (or failed with flying colors, depending on how you choose to look at it), meaning that he met most of the criteria for an ASD kiddo.  

Here is why I am struggling...this is supposedly a permanent diagnosis.  I can't talk myself logically out of the fact that Matthew will always struggle anymore.  Spiritually, I have not given up on the reassurances I have received about Matthew's future, but they are feeling a bit dulled at this particular moment. Also, this is a social disorder.  I am so sad to think of my sweet boy being the butt of people's ignorant jokes, being the kid that no one chooses as their friend because they don't "get" him, being someone that we always want to protect in public so that he doesn't do something inappropriate, being the boy who teachers struggle to relate to or have in class.  I want him to be loved....more than anything in this world.  I want people to love him like I do and see in him the beautiful spirit that is so clearly visible to me.  I don't want people to be blinded to those things because they can't see past his label.

Ironically, for the past two weeks, I have been studying about the idea that what we choose to focus on influences our behavior--in particular that we need to focus on the best in ourselves and others so that we, both consciously and unconsciously, treat ourselves and others as our Savior would.  As I was speaking to a group of young women the other day, I realized that, even though we had yet to meet with Dr. A, I had been practicing this idea all week with Matthew, knowing that she was likely going to give him a label I dreaded.  I caught myself watching his behaviors for signs that he was or wasn't autistic.  I also felt myself starting to see him through the lens of that label.  I think, in part, I was trying to wrap my head around the possibility.  However, I realized that I quickly started to let that overshadow the miracles we have seen as of late and almost dull the beauty of those things because I was dwelling on this dumb label.  I consciously made an effort to rejoice in every little thing Matthew did that was positive and push out thoughts of autism.  I think I did a good job and just felt so close to him and more patient than usual on a couple of tougher (behavior wise) days.  

Then last night, I spoke to a different group and the topic took a new direction--I focused on the power of self-talk.  I realize as I sit here tonight that I feel totally ill-prepared to raise a son with autism...and I'm beating myself up for it (negative self-talk).  The key point is that we have to actually replace the negative self-talk with positive rather than just pushing it out of our minds.  So I'm trying to remember that I have been RAISING a son with autism (and not totally sucking at it)--he isn't a different kid just because he now has a new label!  But I'm still feeling sorely lacking in the emotional strength department as I think more and more about his future.  I'm trying to re-wrap my head around the idea that what I focus on will influence my behavior and therefore influence who I (and Matthew) have the potential to become.  That talk--this topic--took on a whole new life for me tonight and, what I easily gave verbal testimony to yesterday and the day before, I'm really struggling to put into practice tonight.

But let me tell you what I know. I know that Matthew is a child of our Heavenly Father and he was given to us on purpose.  We were prepared for him and he for us.  Matt, who he is named after (Todd's amazing brother who has Down Syndrome), knew it.  We knew it (even though we didn't want to admit it) even before Matthew was born.  Sad to say, I had an impression and was scared even then--we almost didn't name him Matt because I was afraid it would become a self-fulfilling prophecy. Instead, it has become a gift and a comfort--glad we didn't listen to my fear.  

I also know that Matthew has been making INCREDIBLE strides over the last several weeks, as I mentioned earlier.  He is starting to say more words, his communicative intent is improving, his connection to us and others has blossomed, and he is just showing signs of being the bright kid we know he is.  None of that changes.  

Lastly, I know that Heavenly Father will make us (that includes me) equal to the task.  He will not let us fail.  He didn't send Matthew to us so we could mess it up.  He sent him to us because He knew we would help him reach his potential.  

I know all of this, but I am mourning a bit.  Give me 24 hours and a good night's rest and I'll be less weepy, I'm sure.  But I am grieving that we live in a world where labels have such power and that Matthew will change in the eyes of others because of this label.  I haven't talked to anyone about it today because I don't want them to know.  I almost want it to be a secret so that people don't see him differently.  However, as Todd said earlier when we heard the not-shocking news, it's great that we have something we can now be advocates for.  He has a better attitude than me.  I still just want to hug Matthew and cry. 

So there it is. My prayer is that, through this blog, I will be able to hold myself accountable for seeing Matthew for his potential and not through the lens of this label. The greatest gift we can give our children is to communicate their worth and potential so clearly they are inspired to see it in themselves (thank you SRC). That is the best gift I can give any of my kids....but especially my Matthew.