Monday, November 18, 2013

Pity Parties and Prayer

Starting a post is always difficult for me because it is usually born of an emotional experience and I have to figure out a way to put what's in my heart into words.  Not the easiest task, but it is cathartic, therapeutic and somehow a relief to me when I do.  I'm not sure why.  I told Todd that the only times I am capable of actually posting something are the times when I feel "prompted" to do so, and this is one of those :-)

It is also difficult for me to balance sharing deeply personal beliefs about spiritual things knowing that a lot of people who read this won't share those beliefs.  I guess my hope is that you can find common ground in what I share, regardless of your religion or spiritual direction, so that the lessons learned are still relatable.

Sooo....about 2 weeks ago Matthew was in a program put on by the children at church.  About two months prior to this program, they gave me his part:  he was to get up to the microphone (like all the little children have the opportunity to do--they wanted to include him) and say, "I am a child of God."  When I got that script, I was determined to help Matthew succeed!  I knew he could do this and believed in his ability to learn something new...and I felt like this is something that I could get Divine help to accomplish as well.  I mean, it was for church, right?

I started to pray for help (please help Matthew succeed and be able to say this!), practice with him, say the phrase to him as we would go on walks.  I wrote his school teacher, the speech therapist at the school, Matthew's ABA peeps, etc. and asked for their expert advice as to how I could teach Matthew a phrase like this.  They were all in it--we made visuals to help him learn it, he would practice with me at meals, we put the phrase onto his iPad, my Mom made him flashcards.  And he would say it!!!!  He started by saying "God" when we would start the phrase.  Then it was "child God" and, finally, with the right visuals and prompting, he could say "I Child God."

We took our family up to the church to practice doing it into the microphone so he wouldn't be intimidated day-of.  Oh, he loved the microphone and would bolt for it every few minutes, grab it, pull it right up to his lips....and breathe heavily.  Panting and thinking he was hilarious.  We practiced taking him back to his seat, waiting with him (the whole while he is pointing at the mic and saying "talk! talk!") and then standing up and saying, "I child God."  Well, after about 7 times, we were thrilled to get "child God" followed by several seconds of heavy breathing as we would pry him away from the podium.  That, to us, was a victory.

He went to a rehearsal and couldn't sit still to save his life, but when his turn came, he said it!  And over the course of the next few days, I feel like we had finally mastered the "I" part as well.  Man, was I thrilled! I was so ready for this great experience where the congregation would be doing the dance of joy with me and we'd all feel like Matthew had this great victory.

Morning of, I decided I could pray for a miracle--I asked God to please, please help Matthew to get up, say his line without too much distraction of the heavy breathing, and to feel successful.  I told Heavenly Father that I usually don't get that specific and ask for exactly how I want something to go because I understand the idea that He has an agenda too and we can't always dictate outcomes, but I wanted this...and it didn't seem like a lofty request, given all of our prep and his current level of ability.  But still, I kind of knew I was praying for a miracle.

Matthew was crazy at church that morning and i thought there was NO WAY he was going to sit still during the program, but there was a good chance (because I had faith and had prayed so hard) that Matthew was going to say his line.  I walked him up to the stand where he would sit with all of the other children when the time came and handed him off to my fabulous friend who was going to sit with him during the program.  When Matthew's turn came, I knew it was going to be awesome and my heart was pounding.  He got up.....and breathed (for several seconds), and then clear as day said "child"....and then got distracted by the audience, breathed heavily for a few more seconds, and then was escorted back to his seat.  In the middle of the bench where I was sitting, I lost it.  My heart was breaking into a thousand pieces because my miracle--the one I had worked so hard for and my baby's opportunity to have a big victory--didn't happen.  I started to shake I was sobbing so hard and just put my hair over my face, hunkered down in my seat, and prayed no one would look in my direction and see my shoulders shaking.  I have tears rolling down my cheeks as I write this and remember how broken my heart was in that moment.  I wanted him to try again, I wanted to force my miracle to happen!  And yet, his turn was over and he sat down.

I was so distracted by my own over-reaction (I kept chastising myself in my head for having such a strong reaction) that I didn't even notice another miracle that was taking place.  I was busy justifying feeling a bit ticked off that God hadn't answered my prayer.  I mean, it wasn't a hard thing, a big deal to Him, but it would have meant SOOOO much to me!  Why couldn't I have that little success (and, to convince myself that I wasn't totally selfish in my request, why couldn't Matthew have that victory)? Bigger than the miracle of him saying those words that I know he can say was the miracle of him sitting still for the entire time!  Matthew didn't move!  He didn't make any distracting noises, try to grab the watch off a neighboring kid (which he did during practice, all the while yelling the word "watch!" because he was so excited about ti).  He didn't wriggle out of his seat, ask for potty or water, walk up and down the stairs, yell "talk" and bolt for the microphone...nothing. He sat and looked at the books I had provided him with and talked quietly with my friend, looking at some things she had in her bag as well.

So me and my puffy eyes went through the motions during the rest of church, brushing off the comments of how well Matthew sat and what a great job Liam did because I was still mad I didn't get what I wanted.  Candidly, a feeling of "why bother praying" kept playing through my mind and, I'm embarrassed to say, haunted me for the rest of the week because my focus was on what I didn't get, rather than what I did.  I even started to feel a bit like my prayers were bouncing off the ceiling and they got shorter and shorter and I would just fall asleep 90% of the time because there wasn't much meaningful chatter going on between God and I at that point.

Then I went to a conference for women this last weekend and heard a talk from a man who had lost his wife (5 months prego), his only daughter, and one of his sons when they were broadsided by a 17 year old drunk driver.  He talked about his conversations with God following that experience his perspective on life.  One of the things that he related was that he felt like he could pour out his anger, fear, frustration and even process through some of the "losses" that he was feeling at that point....and God would just listen. He wouldn't comfort him....He would just listen.  The comfort would come when all of that started to drain from him and he began to, instead, focus on what he still had--what he was grateful for.  That included the memory of his wife, the privilege of raising his kids to the point that he had, and the blessing of knowing their souls were safe, if you will.  The main point of his message, which is equally profound, was that the peace that came from those reassurances which followed his expressions of gratitude, enabled him to focus instead on the soul that needed help--that of the boy who had hit them...and he went to work helping that boy forgive himself.

The thing that really struck me, however, was that I needed to shift my thinking to focus on what I am grateful for rather than my loss--what i didn't get.  I think that in our lives, we have expectations that go unmet ALL the time.  I am a total expectations girl--that goes for my relationships with friends and family (my hubby included) as well as my relationship with God.  In all of those relationships, however, there are things we don't know or understand and when expectations go unmet, it isn't necessarily because of ill will or malicious intent or anything.  Often, it is because of something we don't see or don't know or don't understand.  In my situation, there was another miracle that would be more beneficial to every person in that congregation and every other child trying to participate in that program.  Matthew didn't steal the show with distraction, but rather, participated to the best of his ability just like everyone else.

So I got my miracle (actual several) after all....it (they) just looked nothing like I expected.  My miracle was this:  I have more confidence than ever that Matthew can accomplish things that we put our minds to.  I also have a new understanding of how prayer works in my life--I need to look for what DID happen (how my prayer WAS answered) rather than dwelling on what I didn't get (be blinded by how I expected that answer to look).  And, finally, a renewed desire to focus on and be grateful for the little victories because as I am, my eyes are more open to seeing the miracles.

Monday, September 30, 2013

Next Time Won't You Sing With Me

Last weekend Todd and I took Matthew to Medford to meet with our friends at the REACH Family Institute.  That four hour drive about kills Todd and I....we are "sky trippers" as opposed to road trippers.  Talk about wimps.  Well, Matthew is quite the little road warrior and did amazingly well on our drive.  He has discovered his lungs and, much to our ABSOLUTELY JOY, points to things in his surroundings now and labels them (at top volume....repeatedly...over and over until you acknowledge). So we hear "truck" and "sign" and "house" and "plane" and "car", etc. and are sooo grateful for the indication that his awareness of the world around him is starting to kick in.  The best part (and the worst part if you are trying to carry on any semblance of a conversation) is that he is determined to communicate and will literally increase in volume each second you delay sharing his attention to the object he is pointing out.  It is so dang cute!  And it warms my Mother-heart.  When we first started making these trips to Medford, Matthew had, maybe, 15 words and only used a select few spontaneously.  This truly represents a miracle.

In our efforts to entertain Matthew, we let him pick a movie.  Normally I just show educational stuff in the car--letters, numbers, signing--but we let him watching Mickey Mouse (lasted 4 minutes before he was bored), Toy Story (lasted maybe 15) and a couple of others.  Finally, I put the most boring letter video you can imagine in and Matthew was riveted.  The most amazing part is this--he started to say EVERY letter before the video would say it!!!!  Todd and I were blown away after a, b, and c, but when he fudged for the first time on letter Q, we were jumping for joy! He ended up getting about 24 letters correct!  Anyone who has known Matthew for any period of time realizes what an incredible thing this is.  We are SO proud.

Now, as great as all of those things are, there is a piece of this puzzle that is falling to place that makes me want to weep with joy.  Matthew is starting to really love us.  He isn't saying those words yet (but I know they are coming), but he is hugging...and not just little hugs.  He turns to me numerous times a day, throws out his arms, and asks for "hug? hug?" And he proceeds to give full-body, wrap-your-legs-around-the-other-person squeezes with a big ol' smile on his cute little face.  Some of his hugs are now avoidance hugs--he asks for a hug to get out of doing work or to get closer to my earring that he wants to rip out, or to reach something that is too tall for him, but I vote that those creative, manipulative hugs are an indication of intelligence and resourcefulness.

Todd and I have always loved Matthew.  He is our son and we are privileged to have this special spirit entrusted to us.  But we now LIKE him as well.  "Horrible mother!" you might be thinking in your mind.  I promise you that if you were to walk a mile in our shoes over the course of the last few years, you would shed that criticism in favor of compassion.  Not that we need pity or anything...just that we have had a bit of a rough year as we have been dealing with phase after blasted phase of behavioral challenges, aggression, biting, impulsivity, total oblivion to others, poop (ah, the poop issues), and other fun adventures.  And though some of those things haven't disappeared and are still a daily trial, the rewards are so much richer because Matthew can, through his hugs, tell me he loves me.

I got a note from Matthew's kindergarten teacher today as well...she said this: "Just wanted to let you know that Matthew had such an awesome day! He was using SO MUCH language and putting two words together.  When he came into my room he checked scheduled, went straight to circle and said “pick fish, song fish, pick fish.”  I reminded him to sit down and he sat and clapped his hands (which right now is his way of raising his hand-working on it to get all the way up in the air) and he was the first to pick his song.  He was also making a lot more eye contact and seemed very connected with the daily activities."  Luckily, we are seeing lots of the same--rich eye contact, more connection, using multiple words together. I could not me prouder of my little dude!!! 

I'm singing with you Matthew!!!!

Thursday, August 29, 2013

Heart on my sleeve

I really want to write about something positive and uplifting, but I feel instead to be completely open about how I'm feeling in hopes that I will appreciate the good days even more as I reflect on the fact that I've come through some pretty tough ones.

Unlike the majority of my hard days, this one has nothing to do with poop.  Perhaps I should be relieved, but poop can be cleaned up in a matter of minutes (I've gotten to be pretty efficient--me, a pair of gloves and some Lysol) and I have a feeling this is something I might struggle with off and on for years.

There are a few things I feel that I don't think I should.....or at least wish I didn't.  Let me explain.

I feel jealous.  Lately I have really struggled as I have looked at the lives of my friends and even other family members and realize what things could be like if Matthew didn't have autism (and the list of other diagnoses).  I know that we are blessed by our sweet boy--that he is a gift in our lives....but there are days when I know his gift is to teach me patience and I don't want to learn it.  And there are days when I know he was sent to me to teach me not to be critical or judgmental  and I just plain don't care.  I am SO exhausted by my life and wish I had the option of going places with my three children by myself without running the risk of getting literally stuck somewhere because I am physically incapable of carrying my 50 lb screaming child back to the car when he is overstimulated and loses it.  I wish I could get on an airplane and not get physically ill as I anticipate what could happen on the flight...or what will likely happen the first night when he doesn't sleep and keeps everyone up.  I envy the families around me that have what I envisioned for my life.

I feel scared.  There are days when I literally wake up nervous because I don't know what I'm going to do to keep Matthew "busy" that day.  If I don't have every hour scheduled, I get anxious because his unstructured time is literally dangerous...those are the times he gets most out of control.  I am afraid that he is my child...and I don't know what to do with him. And if I think about the things I could possibly do with Matthew that might be productive and helpful to him, I have two other children which are likely to sabotage because they are desperate for my attention as well.  I am also scared of what I might do when I get frustrated with my kids.  I'm scared I will yell more than I should and push the other two away because my discouragement with Matthew sometimes comes out sideways at them.

I feel overwhelmed.  I feel like I am constantly making decisions, prioritizing medical and therapeutic care, and receiving information from a thousand well-intending friends and professionals.  I am at the point now where I almost don't know what is and isn't working, what we have and haven't tried, what our next step should be and I'm too scared to abandon anything that could possibly be contributing to any of the progress we have seen over the course of the last 9 months.  I'm sick of being gluten free, caisen free, worrying about fiber and raw/organic this and that.  I'm exhausted at the thought of planning my grocery shopping and knowing that I need to go to three stores to get all of the specialty foods and herbs and supplements that we will need to get through the next week.

I feel less-than.  I watch other Mom's who do so much for their children and find such joy in motherhood and feel like I am less than I should be as a mother.  Other mom's parent children with special needs and do it with such grace...why can't I?

I feel tired.  I think that is the crux of it all because when I am tired, I have a difficult time keeping perspective.

NOW....all of that being said, let me tell you what I believe.

I believe that if I allow myself to become a product of my comparisons, I will never measure up.  Our family is not and will never be like other families because our family is special.  Imperfect, exciting, challenging, but oh so special.

I believe faith can conquer fear.  I have been trying to listen more to what I am supposed to be learning each day because I recognize I don't have all the answers.  Rather than live in my fear, I am trying so hard to be full of faith and, though my prayers feel a bit redundant at times ("please give me strength beyond my own so that I don't lose it on my children today"), they aren't bouncing off the ceiling.  I am changing as a person because being full of faith requires deep, deep humility and I promise you that I have never felt more humble, more teachable, more open or more desperate.

I believe we can sometimes see simplicity on the far side of complexity.  In the midst of my million decisions, there is a simple truth and that is that I'm raising a child of God.  He is mine for now and I know that, in the quiet moments when I consider who he is, I can be given glimpses of the divinity that lies within him and realize that he is powerful in his own way...that Matthew has a mission here on this earth and whether he does 8 or 10 hours of ABA or sees a functional neurologist or cranial osteopath, he will still accomplish that mission.

I believe I am more-than enough if I am trying my best.  GIving in to less-than will become a self-fulfilling prophecy and I can't afford that.

So though it is OK to feel how I feel and I'd be lying if I said that I can always see what I believe clearly through the density and intensity of some of those feelings.  But I guess I still have the responsibility to rise above it.  I know that I am surrounded by people who are cheering me on and that, above all the good advice in the world, sustains me on the hardest days.  For now, I think I'll just go to bed and hope that my children take mercy on me tomorrow :-)

Wednesday, July 24, 2013

Eyes Wide Open

There are about 15 different directions I could take a post with this title.  It could be about doing my best to never blink because if my eyes are closed for millionth of a second, Matthew seems to be getting into trouble these days (he's one of the most skilled pick-pocketers you will ever meet, can snatch a phone from a magician, and runs fast enough now to require me to actually exert substantial effort to catch him).  But it isn't about that, though it would be an entertaining post.  Instead, I want to focus on two very different ways in which I feel keeping our eyes wide open helps bless our lives and the lives of others.

Soooo, Sunday was rough.  Todd had been out of town since the previous Monday, arriving home late Saturday night completely thrashed from a grueling hike with the scouts.  I was impressed--a group of 14-16 year old boys climbed St. Helens, walked 30+ miles along the Pacific Crest trail to Mt. Adams, and then summited that challenging beast.  When Todd got home, I expected thrashed, but the worst part was his nasty feet--he could hardly walk.  I put him to bed and, determined to be a good wife, bandaged his bloody, blistery stumps while he snoozed as exhaustion had completely overcome him. Yes, you should be impressed I did that.  True love.  The next morning, he slept in a little and, because of the pain in said "stumps," he had a hard time walking and didn't make it to the first part of church.  As many a mother can attest, when you've been bearing the full load for an extended period of time (and yes, don't mock, but a week feels extended to me), you can only keep it together for so long.  And I had done an awesome job of keeping it together (patting myself on the back right now).  BUT, come Sunday, I was pretty tired and ready for the hubs to pick up some of the emotional slack, if nothing else.  He couldn't.  I completely understood and did my best to rise to the occasion--got kids all ready for church and fed before 8:30 because I had to be there early for choir practice (I'm the choir pianist).  We made it....late.

So church starts and I'm single-Mom-in' it towards the back of the chapel.  There are lots of visitors and Matthew immediately starts to try to chat it up with those in front of us (visitors).  They were sweet about it at first, but it became increasingly clear that the Dad was not so entertained by his incessant "hi! hi! Hi!" especially during the sacrament.  Matthew pulled on his suit, yelled greetings, hit him and his wife with a book a few times.  You know...the usual.  Admittedly, I was pretty thrilled he was trying to look at them, engage them, and saying hi so many times, but I did intervene when they attempted to ignore his persistent and somewhat physical attempts.  Well, a few minutes into the most sacred part of our meeting and during at time of total silence, Matthew spots someone on their phone....and flips out.  He tries to climb his way over myself, Adi and Liam to get to this person and is yelling "PHONE! PHONE! My turn!  I call!" and other such related phrases (again, note that I am thrilled with the language...just not with the timing or volume).  When I attempt to deter him, it turns to screams and Adi starts to take a bit of a beating during the wrestle to contain him, so I quickly scoop her up in my armpit and start climbing over Liam, dragging a screaming Matthew who is reaching desperately for this person.  Not a subtle exit.

Here's where it gets good.  I walked out the door of the chapel and, literally, three sets of mother-arms start reaching for my children.  Granted, I am almost dropping the armpitted child (Adi), but they instantly just started reaching out.  Adi was swept away by one Mom--she got to me first.  I guess I wasn't totally shocked because we Mom's just know.  If our eyes are open even a crack, we can see desperation.  But what surprised me was that a Dad snagged Matthew from me and started walking down the hall with him, tossing him around, wrestling him, and giving him the type of input he needed at that moment to quit perseverating on the phone.  I was so grateful...and so touched.  After that, three other people, one Mom and two young women, came out of the chapel to help me.  They had seen/heard and, rather than sitting there, made their exit so they could offer their help as well.  It brought tears to my eyes and I felt so loved by the "village" that was sweeping in to rescue.

One of the young women took Adi completely off my hands for the rest of the meeting, taking her to sit with her and her family.  I took Matthew back in and attempted to sit down with a lonely Liam, but Matthew, within two seconds, spotted more phones and was at it again.  Another exit was made and Liam was again left alone in the chapel.  A sweet family came in and sat with Liam....and it was the Dad that offered!  So Liam was now completely taken care of.  After a few more minutes and a much-calmer Matthew, he and I went into the very back of the chapel and sat down again.  You might be asking why in the world I wouldn't stay out in the hall....well, I had to play the piano for the choir in the middle of the meeting and had no idea when that was to take place.  After a few minutes, Matthew spots something that entertains him, so I ask another Dad sitting in front of me to come and sit with Matthew while I play the piano.  Didn't last too long and this Dad ended up in the hallway where I came and found them when the piece concluded.  Perhaps not wanting to admit defeat, I did attempt to take Matthew in again towards the end (I wanted to listen!) and, within minutes, he was screaming and freaking out, so I dragged him out once more...and TWO Dad's followed me out, offering to take my son.  I handed him over, he walked him outside, and I burst into tears.  I was totally out of gas and out of emotional strength to deal with him.  And, just when needed, I was rescued by someone who had their eyes wide open.  I attempted to clean myself up so that it wasn't obvious I'd been sup-supping in the bathroom and the dude didn't know how desperate I had been, but some of my emotion, I realized, stemmed from the fact that I was just so touched.

As I've thought about that experience, not only have I been grateful to be surrounded by people who keep their eyes open--who are watching me in a good way, looking for ways they can ease my burden and helping me with some of the things that others might not even notice.  It is because they are LOOKING.  I feel like I sometimes get so caught up in my own "plight" that I forget to look.  The people who intervened when I needed it so much on Sunday are a great example to me and inspire me to do a better job of keeping my eyes open to the needs of those around me.  It has actually changed my week a little bit and some of the things I have done this week to help others have been because of the examples of my Sunday saints.

The next interpretation of the title....if you would have asked me two weeks ago how things were going, I would have said we are in a rut, a funk, a plateau, and things are really hard.  And they were.  BUT, I realized that I wasn't looking very hard for the good stuff in those weeks where my vision was clouded by the accidental head-butts from a thrashing and uncooperative body, the scratching, the screaming, the phone obsession, the potty accidents, the inability to cooperate, the interrupted sleep, the public displays, etc.  Not that I fault myself for being frustrated--I think that is part of the journey and I wouldn't be normal if I didn't feel that way.  But I knew, because we've been here before, that the experiences we were having with behaviors and lack of progress would be followed by another burst of progress.  So I realized I needed to open my eyes a little wider to look for the good stuff.  And the minute I did, I found it.

Matthew is starting to fill in counting numbers up to about four, label letters (x, y, g, h), put two words together (please read, watch movie, I call, want phone), and his eye contact has been beautiful lately.  I had a rich reward this week when he walked up to me in the kitchen and, while I was fully expecting some request for my phone or food, looked me deep in the eye and said, "HUG!" I squatted down and he threw his arms around me (and legs...we're talking full hug here) and just gave me the biggest, best squeeze during which I felt my boy saying he loved me.  Verbally that has yet to come, but I'll take non-verbal body language like that any day and feel it just as deeply.  I'm so glad that my eyes were open enough that day to not brush him off, but to pause and look in his eyes so I could connect with my little guy.

I guess what I'm saying in a very long-winded way is that I feel grateful for people around me who have their eyes wide open and for the perspective that comes when I open mine.  Life is good people.  It's hard...and sometimes super trying....but it is good.

Friday, May 10, 2013

Big Miracles!

I'm sitting in bed ready to go to sleep, but couldn't close my eyes until I described the events of the last two days.  I don't want to forget the perspective and hope that I feel right now.

Todd and I took Matthew to Medford to visit our friends at the REACH Family Institute, the group we have been working with since last August that focus their lives on helping "brain-injured" children and adults.  We first started working with them at the recommendation of one of Todd's patients, but I don't think I could have anticipated how we would feel less than a year later.

We left at 4 a.m. on Thursday and drove the 5 hours, arriving a little late.  The first thing they do is evaluate Matthew--quiz him on the intellectual programs we've been doing, watch him run to see if there are changes in his muscle tone, crawl to see if there are changes in his cross pattern, watch him for signs of "reaction" to visual, tactile and auditory stimulus, etc.

A bit of background--part of Matthew's "program" with them includes flashcards made to very specific criteria.  They include a word and then a picture of that word.  Also, we put together books using some of the same flashcard topics and have pictures in those as well.  Well, the first thing they did is lay out some of our books and cards so that they could quiz him a little bit to see how much he is retaining.  Matthew immediately grabbed a group of flashcards, pointed to the top word, and said "fruit!"  We looked....and sure enough, it was the word "fruit!"  They tested him on several others to see if it was a fluke, and he continued to correctly identify SEVERAL of the words used in those flashcards!!!!  I was amazed!  Never would I have expected Matthew to be reading (or at least pre-reading) when he has just started to talk.  An absolute miracle.

Also, meeting with them, after not being with them for four months, reminded me about just how much Matthew has progressed with his speech.  He is pointing to and identifying objects, asking for things that he wants by name, repeating words that we say, and trying SO HARD to communicate.  I am so incredibly proud of him.

There are days when it is really hard to parent Matthew. He can be obstinate, is so easily frustrated, gets obsessed with electronics, can be thoughtless and grabby, aggressive with his siblings, and so impulsive.  And as he gets stronger, all of those behaviors become more and more challenging and, quite literally, painful.  But after a couple of days like we just had where we were completely focused on Matthew, I am so filled with tender feelings for my little boy.  I appreciate his sweet, happy personality, am impressed by his efforts to do things that are hard for him (a.k.a. talking), and just treasure my little boy. I sat in the car and watched him walk across a parking lot with Todd, not throwing himself on the ground with a noodle-body and forcing Todd to drag him, but rather just walking beside him, occasionally looking up at his Dad.  I was SO filled with a feeling of gratitude that God sees us fit to raise one of his most choice spirits.

I feel so inadequate raising a child with challenges like these.  I don't know if I do it right and I get so impatient sometimes.  It is easy to watch what he isn't doing and want to feel sad or sorry for myself, or to compare him to typical kids and long for what we don't have.  But then I watch him walking across a parking lot with Dad and I realize that we are doing something right....we are loving the heck out of this little kid and are sooo blessed that he is part of our family.

I'm doing a terrible job of putting into words just what an incredible couple of days we had. I felt like I recognized so many miracles over the past four months.  What a gift it is to catch a glimpse of Matthew's best self and to be filled with wonder at the things he might be capable of if we continue to believe in him!

Saturday, April 20, 2013

Angels in the Outfield

It's interesting, the things that make me emotional sometimes.  Today it was baseball.

Matthew has joined what is called "The Miracle League."  It is a group of kiddos with varying disabilities who get to play baseball with the assistance of volunteers--coaches, professional, college, and high school athletes--who literally take them through every step of the game, offering assistance when necessary.

Today was my first experience with this and I promise you, I saw angels in that outfield.  Matthew was totally uncooperative--I'm not exaggerating.  When up to bat, they'd have to motor him through the entire event and, when it was time to run to first, he'd go limp and they'd carry/drag him to first base.  He'd semi-run/walk/splash in mud puddles as he made his way around the rest of the bases.  While playing in the outfield, he'd wave at me, yell "HI! HI! HI!" over and over, and several times, escape and run madly for the fence where he could see us.  Adi and I just laughed, waved back, and attempted to "negotiate" with him, trying to get him to go back to the outfield.  I watched his TWO buddies (not just one, but two "buddies") struggled with him and literally chased him around the muddy field as they worked to keep track of my squirmy, distracted, totally uninterested player.

They play four innings--each team bats and plays outfield twice.  Every kid hits.  There were some kids who would swing with all their might and strength...over and over and over.  And the sweet, patient pitcher would encourage them and throw ball after ball while we, parents and friends in the stands, would cheer each kid like it was the world series.  When they would hit, I'd almost cry...every time!  By the end, I knew everyone's names and started to learn the stories of the other kiddos on his team.  Most have been playing for several seasons, and many of the parents watched Matthew, laughed WITH me, and sympathized, saying their kids struggled at first as well...encouraging me to stick with it.  They would cheer just as loudly as I would when Matthew got up to bat.

During the last inning, Matthew was in the outfield.  After his first experience (though he did catch a grounder--completely assisted, but credited with the catch nonetheless), they decided to take Matthew a little farther outfield.  I watched them find a game that he could and would do..."run" the ball back and forth between his buddies.  He can't really throw a ball, so catch was out of the question.  He won't stand still to save his life, so playing a position was a bit tough.  But he likes to run to people....so they gave him a ball, and he ran back and forth between them, smiling and squealing every time he'd reach one of them.  I felt SO grateful to these kind "buddies" who met my Matthew where he was instead of trying to get him to just play the game he'd come to play.

I've come to recognize these past months, especially on those days where the "daily" gets the best of me, that I'm not alone in this.  It is absolutely taking a village to raise my son, and I am so touched that, in a world where things can be so ugly, there are angels in my outfield.

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.


video


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 arrived....it 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 trips...so 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 (was...no 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 saying...to 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.