JD’s Story

Deeds in the NICU

We fell in love with JD (aka Deeds) the minute he came into this world.  He was quirky since birth, such an easy baby until he hit his toddler months.  I think he was easy as a baby because Deeds didn’t often show much emotion about things.  JD loved lights, he would fixate on them anywhere we went and we would joke that he was going to be an electrician.  JD was a preemie so when he would struggle to hit milestones we thought he would eventually catch up, and often he would right when doctors would be getting worried.  Finally around JD’s second birthday I called early intervention because he wasn’t developing as much verbal communication as other toddlers his age.    He qualified for services based on a speech delay and it started us down the road to that led to Autism.

The neighborhood we lived in when JD was younger happened to have a small handful of autistic children in it.  At first when people mentioned autism I was in shock and told them he just looked older so they expected him to act older.  I ignored some of his quirky signs of autism because I didn’t want to believe that there was anything different with my sweet baby boy.  I finally bit the bullet and we started the process of seeing if JD did have autism.  The doctor we went to was spectacular and she did all the testing with us over the course of about a month.  She didn’t want to meet him once and slap a diagnosis on him and for that I’m very grateful.  Just after JD’s second birthday he was diagnosed with Autism.

Lunch at Grandma’s

The diagnosis hit me like a load of bricks.  By the time he was diagnosed I had read up on autism and realized that he most likely did have it, however having someone tell you is another beast all together.  I cried.  My tears were a mixture of fear and relief.  I thought I was the worst mother on the planet.  I had a 2-year-old that wouldn’t let me touch or hold him.  I ignored the fact that he didn’t let anyone touch or hold him with the exception of his father.  It almost made it worse that he would scream if I picked him up but wouldn’t make a peep if his dad did.  That diagnosis let me know that I wasn’t a horrible mother, that my little guy just didn’t “compute” the same way I did.  I started to fear about our future and his future, wondering what it would be like.

We dove into all kinds of things to try to help JD.  Some things worked, and others didn’t.  We realized quickly that we would try about anything because when something worked it rocked our world and would give JD a huge boost.

JD is now 3 and is such an endearing little guy.  Right around his 3rd birthday he just started to really jabber.  At fist we couldn’t understand what he was saying (sometimes we still can’t) but he found his voice and he loves to use it now.  He has Echolalia so we don’t say anything around him you wouldn’t want repeated later.  One of the issues JD struggles with a lot are repetitive motions, hand flapping and jumping are his favorites.

In November 2010 JD started to have seizures.  After a lot of testing an MRI showed some serious brain damage that he has had since birth that we didn’t know about.  The condition is known as Periventricular Leukomalacia (PVL), and in essence some of the white brain matter around his ventricles is dead, or damaged.  It is mostlikely due to his prematurity.

He was also diagnosed at that time with mild cerebral palsy.  Another condition he has probably had since birth and was mild enough to go undiagnosed.  He was our first baby, we didn’t realize that the stiffness in some of his limbs wasn’t normal.  Now looking back we should have picked up on a problem when he didn’t crawl typically for a long time, but he is doing quite well now.  He can be a bit clumsy at times, and sometimes he can’t do certain tasks like other kids.  Overall you wouldn’t notice these two conditions unless you knew what you were looking for.

In September 2011 Deeds was diagnosed with Epilepsy and started on medication.  It was a hard choice for us to make and after almost two years of working with dosages it has started to help control his seizures.  As of now the last documented seizure we dealt with was December 2012!

Deeds right around his 2nd birthday

One of the bigger struggles we’ve have with JD is wandering.  JD loves to explore, like most typical little guys.  The difference in JD is that he doesn’t care if you are around, and he will not respond to his name being called when he is wandering.  The first time I lost JD I was at a store and he was strapped safely in a stroller with his sister.  I turned around from looking at a product and he was gone.  He had figured out the buckle and I couldn’t find him for almost 30 minutes.  Everyone around was frantically screaming his name and we finally found him outside, two stores down playing in the doorway of another building.  I ran up to him calling for him the whole time and it wasn’t until I touched his arm that he turned and notice me with a simple “hi mommy.”

That was the beginning of the wandering. He is like Houdini, nothing can keep him in, only slow him down.  We had to install high locks on our doors that lead outside at home.  He has since figured out how to push things over to be able to reach them.  We worry about his wandering off constantly. He lacks that built-in sense of danger that most people have.  That he should stay away from heights (he wants to jump off them), or away from bodies of water (he doesn’t know how to swim yet).  Unless there are two adults present, one specifically to watch him, we don’t often take him anywhere unless he is strapped into a harness or the back of a stroller.  We started to look into tracking devises and after weeks and hours of searching, reading countless reviews and articles online, we came across service dogs for autistic children.

(Update 6/2013: Deeds has outgrown many of the issues with wondering we’ve had but sometimes he will still find himself “lost” We have used Magpie to track him down quite a few times and she is amazing.  Quite literally a life saver)

These dogs are trained in so many areas.  The big ones we latched onto were the search and rescue and the ability for the dog to notice and stop repetitive motions the child may make.  (Update 6/2013: Deeds has outgrown many of the issues with wondering we’ve had but sometimes he will still find himself “lost” We have used Magpie to track him down quite a few times and she is amazing.  Quite literally a life saver)

In public the dog and the child can be harnessed to one another and so the child can walk on their own and not wonder off.  It is EXACTLY what JD needs!  The ability to let him gain his independence without putting him in harm’s way.  We talked about it for months and finally decided it was time to act.  This blog was started and dedicated to our efforts to get our little Deeds an Autism Service Dog.

Update 6/2013: We’ve had Magpie for over a year an a half now and it is amazing what a difference she has made in the life of our son.  Read more about it on the About Magpie page.

Our Little Man around 7 months old

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  1. This will be a great thing for my grandson JD !

  2. You guys are AMAZING. I wish you the best of luck and prayers on this journey and will pray and support you guys during it!!! You are two awesome people, the best to handle this and the Lord is definitely watching over you.
    God bless.

  3. I loved reading JD’s story and would like to know if there is anything I can do to help? My step son has asbergers, he and I have struggled to make a connection over the last 11 years. I remember the first time he gave me a hug, about 6 years ago, we were returning him to his mother after summer vacation, I cried from Boise Idaho to Lehi Utah. Soon after that he came to live with us full time. He has graduated from mainstream public school and is preparing to serve a mission for the LDS church. Two years ago he got a cat and that made a huge difference in him, he has a friend who does not judge, he has taken care of Iris and worked to pay for her needed veterinary care. I can only imagine the great strides a service dog would provide for your son.

  4. Even though I haven’t seen you in what, over a year? I love your little guy so much! I’m glad you started this blog so we can all understand him more and still follow his journey. Love you guys!!!

  5. My youngest (who has Asperger’s) also has no sense of the “don’t do thats”. After trying a countless number of locks on the doors, we finally installed some of those cheap magnetic alarms. They’re very loud and Moose (our nickname for him) cannot stand loud sounds, so after several times of opening the door & tripping the alarm, he stopped trying to escape to the neighbours (our neighbours are over 1/2 a mile away and we have wolves, cougars, coyotes, etc. in this valley!)
    Maybe try these until you’re able to get your service dog. Even if it doesn’t stop him, it will give you a quicker heads-up so he won’t make it as far when he makes a mad dash.
    I also use a ‘kid leash’ when we are out and about. He calls it his “puppy pack” as it is a little backpack with multiple straps and a leash. People give us some odd looks when we use it, but forget them, they have obviously never had to chase their child out into heavy traffic over and over again. (If you put it on backwards they can’t reach the buckles also!)

    • Both are great ideas that we have tried. The alarm Deeds actually likes (we have to watch him like a hawk around fire alarms), and the kid leash we use often. He can get out of them but they slow him down. 🙂

  6. I just found you via @lotOspermies. You sound amazing, the work you have done with JD and everything you are going through. When I read that you are worried about water, I had a thought. My girls are currently enrolled in Infant Swimming Resource classes. I am not sure how much they have worked with children with autism, but once they have been through the classes, they are able to save themselves if they fall in the water. My 8 month old will be able to swim to the surface and float. My 2 year old will be able to swim to safety. Their website is http://www.infantswim.com if you are interested.
    Good luck in October!

  7. I heard about your story through someone at our church, Community of Faith in Cypress, Texas as part of our ‘bless-back’ project from Easter where we were challenged to find ways to give to others in need (and our church even gave money back to the congregation). At any rate, your story immediately hit home with our family as we have a son w/ Autism and struggle with many of the issues you face (though not with the other health issues). I hope our gift helps. If I can offer any words of comfort or support, I can say that as our son is now 7 yrs old, it’s amazing how far he has progressed in terms of behavior, speaking, etc…we dont know what the future holds but every day seems like we see a little more progress in the right direction. if you would like to ever visit, you can follow me via twitter under “leftyjeff”. 🙂

  8. I heard of your story through one of our Servers. You see, I own a small Diner in Provo, UT. “Norma Jeane’s” Diner. And after reading your story, and seeing that adorable JD, I would be honored if you would let us put up an Angel tree to help you out.

  9. Bobbie, thank you for sharing JD’s (and your) story. We also have a son with autism (Nick, 15) who has a 4Paws service dog (Red, a German Shepherd/Golden Retriever mix). We are so happy that Magpie is better, and hope she can resume her duties really soon. Feel free to friend me on FB if you like. We heard about Magpie through FB and were praying for her and you guys.

  10. Hey, I just wanted to nominate you for the “Inspiring Blog Award”
    If you want to partake, here is the link.

    http://thelukalife.wordpress.com/2012/07/25/inspiring-blog-award/

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