autism · diagnosis

Diagnosis Stories: Jaron

(For those of you who know my story, you know that the Smith family played an integral part in us getting Casey diagnosed. Their son is 5 years older than Casey. They got us through the denial, the diagnoses and the aftermath. They had gone before and helped us along our way. This is their story:)

From Tammy (Mom): 
 It started at his delivery. He was term, but my blood pressure was off the charts. They induced very calmly and it was a boy!!!????!! No, they told me every ultrasound it was a girl. I WASHED the pink clothes. “Are they sure?” Yup, they were sure!!!!

  Then at his baby blessing. He was blessed the same day Miranda (8 yo) was confirmed {in the LDS Church, children are given a blessing shortly after birth then baptized and given a blessing, or confirmed, where they receive the Holy Ghost at 8 years old}. She waited 2 months to be baptized so the blessing could be the same day (as her supposed sister oops!) Anyway, we had a ton of family in town.  Deron confirmed Miranda first, beautiful (normal, as it were). Regular stuff, married in the temple an example to her brothers etc… (good job sweetie!!!!!!) then he came and got Jaron from me.

Jaron’s blessing started out fine, but it was different. A lot of pausing and the blessing itself was not very long. What the HECK? Nothing about mission or marriage or anything…. Hmmmmmmmm? Strange…? I let it go and didn’t say much about it. He’d been very emotional as well.

 Three days later Jaron started throwing up a lot. I luckily got into our pediatrician, but by that time there was blood. We got there and the doctor was sooooooooo calm, but moved really quickly. He stepped out of the room for a minute then came back and told me he had called an ambulance. WHAT? His heart rate was over 300 beats per minute he had SVT (supra ventricular tachycardia). Luckily Deron had come home to watch the kids for the doctors appointment. He called my sister who had cancelled her plans that day and she wasn’t sure why.  At the time there was no reason then there was a big reason. We were transported to Mary Bridge Childrens Hospital and Deron followed in the van. We got there and were rushed into an ER room filled with about 30 people ready to work on him. It was horrible!!!! They had to shock his heart not once, but twice. If it hadn’t worked the second time it was open heart surgery. It worked!

He was developing normally until 18 months. He had been off the bottle (not anymore). He looked at the camera when his picture was taken, (not anymore.) He just slipped away after the neck surgery. We had behavior issues, sensory issues, food issues you name it, but he was alive.

 I made promises to Heavenly Father that day in the back of the ambulance that I now had to keep. Deron knew driving behind the ambulances why the blessing had been so different. He felt he wasn’t going to live.

The first doctor we saw wouldn’t give him a diagnosis of autism because he didn’t want him labeled if it wasn’t. He said the global delays in speech and cognitive  were from all the trauma he’d suffered. The problem with that was we couldn’t get services or help until the diagnosis. He was finally 3 years old when we decided to go to Seattle children’s autism clinic. We got the diagnosis.  We were one of the first of four kids in the autism preschool program at Manchester elementary. Ten years later I was hired as a para educator in that program.

How we felt? It’s such a loaded question.  I’m not sure I really knew how I felt because at times it wasn’t really happening, but it was. My mother was on the phone with me during Jaron’s neck surgery. I’ll never forget she kept asking me how I could be so strong. Bottom line it was what we believe, our faith was the only way I could be strong. It was what she and my dad had taught me. It was the fact I was sitting by my best friend (Deron) through it all. We don’t have a perfect marriage, but we’re in this for the long haul together.  I have Multiple Sclerosis (MS). That was diagnosed the same year as the neck surgery. 2000 was NOT a good year for the Smith’s!  It’s how we react to our trials that we’ll be judged. I also was taught that by my parents. Laughing is easier and crying gives me a headache. 
Both Deron and I have grieved at different times in different ways. He had a horrible time when he turned 8 and wasn’t baptized. As a dad that’s huge. As the priesthood holder in our home when each child is born you think of their life milestones. Milestones that wouldn’t be there for Jaron. When he turned 12 and we got the priesthood preview invite from the primary in the mail. I found myself on my knees in the driveway crying. We tried to explain that to our priesthood leaders and I guess we did a poor job of it. We were trying to help the next family that came along, but it’s a hard thing to explain and understand. It’s grieving! When someone dies, we grieve. In autism world, we grieve at different stages in that child’s life. Its okay, but it’s something as parents we have to work through. 
Jaron’s diagnosis was actually a relief for us. We finally had a reason why he behaved the way he did. We had no idea it would be so severe. The diagnosis meant we would finally get help. Therapies, respite, schooling etc…  He was finally potty trained this year sort of (pooping is still an issue). He’s 13, non verbal, funny sense of humor, my angel and our miracle child. 
This year with the help from one of my 3 brothers we were able to get Jaron an iPad and an app called “Talk Tablet”. It’s awesome and it’s given him a voice. He’s actually requesting things (food, drinks, activities, potty etc…) for the first time. There’s hope! We’re transitioning to junior high next year and one of the SLP ladies is on the school districts technology committee. He takes the iPad to school with him. Wonderful tool and blessing! Currently we receive no benefits. We had a review about a year ago and Deron made about $11 too much a month. So, I went back to work.
One of the main reasons I took the job in the autism  preschool program was because it wasn’t the best of experiences for us. In my little fantasy brain I’m trying to learn as much as I can and maybe make a difference in the life of an autistic child. Plus, the women I work with are amazing.

So, I try everyday to deal with the autism the best I can and make my Heavenly Father proud of me and allowing Jaron to stay with our family. My older kids would be different people without Jaron. Patience, loving, understanding etc…

These flowers are called Stargazers its from the Lily family. When we were in the ICU at Mary Bridge for his heart a dear friend brought me a plant of Stargazers.

They are very fragrant and sweet. The flower and smell to me represents life. Jaron lived when he should’ve died. He lived because of prayers and promises I made that day in the back of an ambulance to God. It was because of the prayers of our families and a very loving Heavenly Father who granted us the desires of our hearts. So the work that goes with autism isn’t that bad when you keep it in perspective.

We planted the Stargazer bulbs in the front yard at our old house. Every year they bloomed for a week. It was always the week of the anniversary of when we were in the hospital with Jaron around August 5th – 7th. When we moved last summer it was mid July and really emotional for me because I knew that those Stargazers were going to bloom the first week in August and I wasn’t going to be there. I survived and can always plant more bulbs no matter where we move to. My thoughts reflected back to one summer several years later when Deron was mowing the front yard and “ACCIDENTALLY” mowed the stargazer plant before it had a chance to bloom.
He was forgiven quickly (sort of). OOPS!!!

 From Deron (Dad):
The craziness really did start early.  Like Tam said, when J was delivered she and almost everyone else thought he was going to be a girl.  To be honest I thought he was going to be a boy.  The doctor is holding Jaron and announces we have a son.  Tammy turns to him and says “Are you sure?”  I looked at her and started laughing.  All that money I’m paying the doctor sure as heck better be able to tell if it’s a boy or girl!!!

Blessing… You know, priesthood blessings of any sort can be an interesting thing.  Why are some so strong, so profound, so direct, or why are some harder to give?  I’m sure and I think there are many reasons.  But, even now I have only been part of a couple blessings that were as strong as Jaron’s.  As I began Jaron’s blessing I was able to bless him with certain things, but anytime I tried to bless him something you might consider “normal” I couldn’t.  As Tammy said there was a lot of pausing.  I kept searching for the right words and couldn’t find them.  I even went so far as to try and promise him certain things in his future…that is when the spirit literally held my tongue.  I could not, even if I had wanted to speak or bless him with anything that truly wouldn’t happen in his life.  I couldn’t say anything about marriage, or mission.  So when I was following an ambulance 3 days later, I knew he was gone.  What I didn’t count on was the power of a mothers prayers.  Although things are always as they are supposed to be in the Lord’s hands, we just don’t usually see it.  When I was set apart as a missionary at 19 the one thing I still remember from that blessing that Pres. Bruce Merrill gave me was “You will be a leader of young men throughout your life.”  Now sure almost every calling I have had in my life has been in the YM or Scouting program, but how could he or I have foreseen that I would in a very great sense always have a young man in my home that I needed to care for?

Tumor…Really?  We hit all the green lights with his heart, he is doing great and we only had one little incident, but besides that he is doing great and the meds are controlling his heart rate.  What is this lump on the back of his neck?  First ENT quack wants to do a needle biopsy…um neither Tammy or I am feeling this is good.  The only time in our lives we have ever went to get a 2nd opinion was this time.  Second ENT…he checks out J and then leaves the room (shades of heart incident).  When he comes back he explains in his 20+ years he has never seen anything like this before.  OK…  Then he tells us we have an appointment in 2 days at Seattle Children’s with the head pediatric ENT.  Also that he is not going to charge us for the appt because he didn’t do anything for us.  REALLY!??!  You got us into Children’s with the Chief Surgeon in 2 days…are you kidding me???  He only want’s to know the outcome so he can learn.  (in my dreams this is what doctors have always been like…just didn’t know they existed in the real world).

Children’s is great…of course.  Our poor little trooper.  Tumor the size of a golf ball.  It gets sent around the US to different places.  Results come back negative a couple weeks later.  They only see this kind of tumor at Children’s once every 2 or 3 years.

Very shortly after this Jaron starts to regress.  I don’t think we really even noticed it at first.  I mean this little guy isn’t even 2 and he has been through the ringer.  But slowly we see the changes… then quickly the slide into what we lovingly call the Reign of Terror.  I believe the pictures speak for themselves.  The day I knew things absolutely were not the same was when I was holding Jaron’s hand on the sidewalk and a semi truck went driving by.  Jaron didn’t even flinch or blink or anything…later that day, Tammy went to vacuum in the house, sheer terror.

Between Isaak’s prenatal stroke, Tammy’s Multiple Sclerosis, Jaron’s autism…our plates a little full.  Truly I am absolutely amazed by how much Tammy does.  She’s a rock star!!!!!  One of the greatest realizations for me was when I was talking with my mom who was visiting us.  She mentioned how much Jaron had changed since she last saw him.  I kind of scoffed, I mean…really, we were pretty much at the same point we had been for years now.  My mom lovingly opened my eyes to the fact that when you look out your window every morning at the tree in your yard, it doesn’t really look like it is growing or has changed much.  But if you are away for a period of time, when you come back you will be amazed by the growth and the changes.  Just like my wonderful autistic son.  Growing at his own speed, but continually growing and ever changing.

I am awe struck the more I look back on my life how the Lord prepares you in small ways to handle what lies before us.  Growing up as a youth we had a young man in our ward who had Down syndrome and the experiences I had home teaching him and his family, being in quorum with him, and especially when he asked me to help him bless the sacrament for the first time.  (That is a story in and of itself.)  What a blessing to have had Mikey as a friend.  I then had a girlfriend who asked me to go and help out at Special Olympics one time.  What an eye opening and heart softening experience.  Fast forward to today and these as well as many other experiences have made such a difference in being able to handle and deal with the every day stress. 

The biggest thing I have learned (am still learning!) is that grieving does not always show in the way people think.  I carried it for a long time…unbeknownst to me even.  Satan tried to use the weight of that grief and stress to my potential destruction and the cost of my family.  People need outlets, confidants, true friends, and if we actually do ask for something or tell you something…by the time we do that, we are probably at critical mass.  It’s not the “oh wouldn’t it be nice if” or I could use a hand, it’s like batten down the hatches, we may be going to threat con Delta!  Still remember coming home from one of the hospital experiences and Bruce Lay had come over and mowed the lawn for me.  He didn’t ask, he wasn’t my home teacher, he just came and did.  That was the kind of help I needed.  I mean really…the kids would rather I get them a burger or pizza anyway.  Food as nice as it is not to worry about will never mean as much to me as after being in ICU for a couple days and coming home to a freshly mowed lawn.  I learned that day you have to let others serve you if you want to know how to serve others.

Alright my thoughts are just flowing a bit randomly and I need to go anyway.  Nice to just express them.  The most amazing thing in my life is Tammy.  Because of choices I made the Lord blessed me with her.  We are blessed to have Jaron.  We often say he has the “golden ticket” and it’s up to us to live in such a way so we can be with him.  He has kept myself and our family much more humble and close to the Lord than we would have been otherwise.

12 thoughts on “Diagnosis Stories: Jaron

  1. Ok, now my story seems……not really a story. First time I had been contemplating our family storyr, its not really worthy. This family rocks thanks for sharing them with us.

  2. That is so not true! You never know what part of your story is going to help someone see something in their own lives. Don't compare! Don't ever compare!

  3. What a remarkable family, they are an inspiration. I too didn't know about many of these details!Thanks for sharing Tammy and Deron, I admire you even more!

  4. Thank you for sharing your stories. Can't see the keyboard, dang tears! Life is an amazing and wonderful place, our job is to get through it whole and happy to the other side, it's the stuff in the middle that is so hard. Bless you for loving Jaron just the way he is. Kudos to your three older children who are and always have been amazing with Jaron! (too stupid to figure out the profile thingie, this is from your "anonymous" sister-in-law Irene!)

  5. Thank you, Deron and Tammy, for sharing your journey about Jaron. There were parts of his story that I didn't know. I really admire your strength. It helps me with my own "full plate". Thanks for your example.

  6. This is an amazing article.According to it gun hunting has a considerably longer range. With this in mind both use some different tactics and some of the same and both are equally challenging. They are just different methods of hunting but are still hunting.I am agree with you.Thanks for sharing the information!!

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