Monday, September 9, 2013

Grateful for the Struggle

My baby, Miles, is so darling and fun.  In many ways he's been allowed to do things that I would have never let my older two kids do at this age--such as climb the play set ladder and go down the slide all on his own.  Because he has 2 older brothers to keep up with, his gross-motor skills have been off the charts.  Also unlike his older brothers, he has not been overly verbal.  Tyson knew 200+ words by the time he was 2, and was technically reading (basic CVC words) BEFORE he turned 3.  Emmett was also ahead of the game, and could do what Tyson did shortly after he was 3.  Miles is not quite that way. It's so funny to be a parent sometimes, because just when you think you know what you're doing, you realize your next kid is totally different and you have to learn how to be a parent all over again, and suddenly you feel like you've never been a parent before, because it feels NEW.  And it is.  I had to learn how to be a parent to Tyson.  I'm still learning how to be an effective parent with Emmett with his entirely different personality and temperament. And now we have Miles, who in comparison to my other kids' benchmarks, seems to have a speech delay.

It's been a different sort of experience to face this. I was waiting and expecting all of the benchmark stages that I was used to, but he didn't babble when babies normally do.  He doesn't like me to sing and sing him to sleep like my other kids did.  He wants to lay down in his bed in a quiet, dark room, instead (and I do believe this has affected his language development).  When it comes to communication, he just hasn't said much.  At first I thought that maybe it's because he isn't a little-man of many words, and maybe it's because he has 2 older brothers talking for him.  But then I realized that he wasn't actually using the majority of the words he has learned in the past.  He seems to learn a word and use it for a while, and then the word disappears completely.  So, as a teacher, I've been concerned about his retention.  I brought it up to the pediatrician, and he said Miles needed to be using between 3-6 words to be in the "normal" range for his age group. We were hard-pressed to find three, but I FINALLY found them.  He was USING the words "this, dog, and done" consistently.  But it'd been at least 6 months since he had used other words he'd learned before.  He used to say 'amen' at the end of blessings on the food, and he'd said 'Jesus' during the Easter Pageant, and 'mom', and 'dad', and 'oh', but for whatever reason he wouldn't use them anymore, or even try to imitate words like that back to me, and I found it concerning.  If he wanted something, he kind of even quit pointing and would just scream, "AAAAHHHH!"  The doctor asked me a few other age-appropriate questions and he said he didn't think Miles would actually qualify for help through the Early Intervention Program (since we were able to find 3 words), but since he was borderline, he'd recommend me for a screening just in case.   And that's when my heart sunk. 

I wasn't afraid of the Early Intervention Program, because my friend, Rachel, has walked this path with her son, Ty.  I have been amazed at the progress I've seen in Ty.  Because of Rachel's dedication to fighting for her son, and because of her full utilization of the program, the results took her son from having an autistic label to being main-streamed & label-free by Kindergarten (INCREDIBLE!!!).  It was an exhausting road, and they had an intense schedule, but the difference in Ty was NIGHT an DAY from the beginning until the end.  So, I knew that if Miles needed this program in any way, even if it was just for a speech delay, that I was doing the right thingBut, I also felt sad.  Whether or not Miles' development seems "fine" compared to other kids who have more severe difficulties, he was still not where HE needed to be.  And no one really wants that for their kid.  No one wants to see their kids struggle on basic levels, and I was concerned about how to help him catch up, and how his future might be in school--was this a glimpse of what 12 years of school will be like for him--fighting to keep up with the normal averages?  I wondered.  To fight my twinge of sadness, my fears, and worries, I told myself that it was "okay", and I took the optimistic route waiting for the Early Intervention appointment.
Later that very same day, my neighbors had a trial of their own.  Their son & daughter-in-law were in a roll over accident.  Time moved in slow motion for them, and everyone who followed their story.  They had a difficult phone call from their son, Jordan, who was helping their other son Caleb & his new bride, Kristen, move out of state.  They were on the road, in the middle of nowhere, when Jordan saw their vehicle flipping about 7 times behind him.  He had to turn around to get back to them, and the scene was not pretty.  The jaws of life were used on the vehicle, Kristen's leg had been through the windshield, and Caleb had to be put on a stretcher to go to the hospital.  From the phone call, to the hospital experience, no one knew for sure if Caleb & Kristen were going to be okay
My neighbors were able to fly out of state quickly--but they spent the whole plane ride not knowing if their kids would still be alive.  When I heard what my neighbors were going through, I immediately knew how comparatively small our speech-delay trial with Miles is.  I have my baby still in my arms, and who cares if he needs some extra help learning and retaining his words?  It's something we can work on together, there's so many resources to help out there, and in the end, having a struggle just means we're alive!  My heart went out to Trey and Janel, and what they might be feeling--wondering if it was going to be all over for their son & daughter-in-law.  The hopes, the dreams, the good days, the bad days, the family trips, the time together, the day-in-day-out STRUGGLE that we all go through: Was it going to be over for them?  We all prayed it wouldn't be.  For several days we followed them closely on facebook, and they let me use these pictures.  I'm glad, because I felt the Spirit when I saw their smiling faces from the hospital. 

Between the both of them, there were cuts & lacerations, a concussion, a bruised lung, broken bones, and other physical, not to mention emotional trauma, but they were smiling & happy to be alive.

My neighbors were all so inspiring throughout the ordeal.  They posted prayers and testimonies on facebook recognizing God's hand in their life, and shared personal faith-building moments.  Some of the experiences they shared reminded me of a favorite scripture in the Book of Mormon:
1 Nephi 1:20: "...But behold, I, Nephi, will show unto you that the tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance."
I did a search for the phrase "tender mercies of the Lord" in the Bible, and found these ones:

Psalms 40:11

Withhold not thou thy tender mercies from me, O Lord: let thy loving kindness and thy truth continually preserve me.

Psalms 145:9

The Lord is good to all: and his tender mercies are over all his works.

Psalms 69:16

Hear me, O Lord; for thy loving kindness is good: turn unto me according to the multitude of thy tender mercies..

Now for another story.  I found out a week ago that my best friend who calls to check up on me every day has skin cancer.  Fortunately it's not melanoma, but it's still cancer & nothing to mess with.  Also, fortunately, it was cut out of her collar bone not even 24 hours after she had the biopsy results.  It was a treatment that blind-sighted her, and when it happened, the doctor told her he was "barbecuing" her skin.  She thought it was gross and weird, but told him, "Well, Doc, as long as you don't pull out the Teriyaki sauce, we'll be okay."  Bahahahaha!  Anyway, as for the inspiring part of this story, she had been nervous and stressed about the confirmed cancerous spot on her skin, and also the other spots that weren't biopsied, but that need to be.  The treatments hurt, and some of the spots are in noticeable places.  As all of these concerns filled her mind, she heard a competition on the radio, so she decided to call.  Would you believe that she happened to be the 9th caller, and she won the Ben & Jerry's Prize Pack?  When the DJ answered the call she said she couldn't believe it and that it was the best news she'd heard all day.  The DJ said, "Uh-oh, ice cream is good, but not THAT good.  What's your day been like?"  So she told him about her cancer results, and her concerns about how it will affect the way she looks and her future, and the DJ basically told her, "We're here for you.  Remember that you're beautiful no matter what!"  He also told her that he was glad she won this prize pack because maybe it could help "make a bitter day sweet", and to keep them updated on how she was doing. 
You cannot tell me all of that was a coincidence.  Her sequence of events winning the prize pack and encountering the friendship of strangers at a much needed moment was without a doubt a tender mercy of the Lord.
So, I'm going to practice what my neighbors & friends' stories have reminded me to do.  I am going to list the tender mercies I have seen on this learning experience with Miles.
  • It's a blessing that Miles is able to talk, period.  We have other family and friends whose kids are dealing with severe delays or disabilities, and our struggles are minimal compared to the burdens those sweet children must carry.
  • It's a blessing that I have friends who have forged the Early Intervention Path so I wouldn't be afraid of it.
  • Even though the church Nursery age is 18 months, because I was called to be a Nursery teacher, I have been able to take Miles in with me.  So every week for the last 9 months, he's been exposed to singing time, lesson time, coloring time, and learning interactions with friends...I believe the Lord blessed me with this calling to help my son, especially because at the time I was given the assignment, I had been completely unaware Miles would need more interactions like this to help his learning & development.  Here I thought I was serving the Lord by fulfilling an assignment, and really it was benefitting me.  :)  That's how the Lord works, though.  Like my dad says, "You can NEVER one-up the Lord."  No matter what you do to serve Him, He always blesses you in return, and you can never truly repay the debt, because the Lord sends such bounteous blessings.
  •  I wanted to buy the Signing Time DVD set, but they're not on clearance anywhere, and there are no real discounts Online.  The sets are still about $150+.  But our Early Intervention Coordinator loaned us her own personal set for a couple months, and Miles LOVES them.  I'm amazed at the way his efforts to communicate FLOURISH when we watch Signing Time.  Sometimes he tries to sign, or he giggles--like the other day, he was laughing at the sign for penguin--he gets that the person looks like the penguin and he thinks it's funny.  What's crazy to me is that when we do Signing Time, he usually doesn't sign back, but he tries to talk more, and he's getting better every day.  I think he learns differently than my other kids and he needs the visual/tactile/movement sorts of activities to really solidify his learning. 
His 1st screening showed that he qualified for further evaluation in 3 areas - including Communication, Social, & Fine Motor Skills.  After the first meeting where we realized that he wasn't doing some normally age-appropriate things, such as interacting with himself in the mirror, and being able to follow commands--like getting something from the other room, we started working on those skills.  Who would have thought that sitting in front of a mirror is a learning activity?  But my other kids LOVED the mirror, and Miles had previously cared less.  He'd point sometimes, but now that I've made an effort to give him quality "reflection" time, he'll smack the glass and smile at himself and coo, and act like a kid should in front of a mirror.  We also started practicing giving him simple tasks to complete.  I now make a point to have him throw his diaper away now when I change it.    After the 1st time, I thought he would have the skill in the bag.  But then the next time he did a circle around the island, and another time he walked to the trash and away from it with the diaper in his hand.  One day he threw the diaper away and I was so proud of him.  Five minutes later I gave him a blanket to hold, and this is what happened: 

So we're still working on that skill.  :) He's so cute!  At any rate, Miles made it through 3 stages of the process, but didn't actually qualify for further services or therapies.  Even though I thought I was doing okay with the tests and meetings to help him, I felt lighter & relived all of last week once I knew we didn't have to continue the process.  I feel like I have had a glimpse into what other parents in this situation experience--even though it's nice to have programs available to help your kids, it's not easy, and I have an increased love towards parents whose kids are severely behind in any area.  It has reminded me that we need to reach out and love them and their kids more than we already think we do.

The word "qualify" is such a juxtaposition, because you don't want your child to have to qualify, but at the same time, if it's what they need, you hope they will qualify.  In some ways it is a relief that he didn't qualify for more, because it shows he's already made some noticeable progress in the last month.  In other ways it feels more like a burden/responsibility that he didn't qualify, because I am aware that we definitely need to keep working with him on a more focused level if we're going to continue to see him improve with his communication & retain what he's learned.  All in all, I'm happy with the progress he's making, but I'm still waiting for him to hit one more benchmark.

Miles is almost a year and a half old, and I'm still waiting for him to say my name.   My older kids were saying Mom & Dad when they were 7 or 8 months old.  Miles started really using "Dad" last week, and is getting really skilled at any words that uses a /d/ sound .  But, I want to hear him say "Mom!", and I don't just want him to do it once and forget how to say it for 6 more months.  I want him to say my name every day.

I wonder if that's how God feels about us.  Maybe that's why we're supposed to pray every day.   Our Father in Heaven doesn't want us to cry about things and do everything on our own in this life.  He wants us to call His name--turn to Him, need HIM--because He's THERE for us, and He'll do anything he can for us.  His arms are always open, but He needs us to show Him that we know where the blessings came from.  Maybe because we're His children, He needs us as much as we need Him.  He doesn't want us to call His name and forget about Him for 6 months.  He wants us, needs us truly, faithfully, every day.

And so the challenge now is to remember this lesson when I'm in the heart of any other struggle that will come my way.  I want my Heavenly Father to know that I'm grateful for the struggles that bring me closer to Him.  I know it's a blessing to be here learning & growing.  Every day is a gift to be alive and to be with those I love, and with God's help any struggle we're ever given will eventually bring us joy.