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.
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!
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.