The aftermath

I don't think there is an adult in our country right now that doesn't know the devastating events of last Friday or immediately react to the simple words "Sandy Hook Elementary". It was undoubtedly one of, if not the worst events our country has ever experienced in our history. Even a week later people are reeling from it and it has brought out a lot in people that we don't usually see. Heroes emerged and families were drawn closer together. It made us all reevaluate our priorities and how we are going through life, especially where our kids are concerned. It has been very different for everyone and we have all processed it in our own ways.

For those of us in the Autism community, however, it has been a very different experience all together! It didn't take long for speculations to come out of the media as to why the shooter (I prefer not to acknowledge him by name) would have done such a horrific and vicious thing. Some made sense and some were simply made out of ignorant assumption. That is where the tie to ASD (Autism Spectrum Disorder) families came in. Sadly, one of the first things that people ran with was the possibility that he had Asperger's Syndrom. For a lot of the country it was the first time they had ever heard the word Asperger's and immediately began associating it with violence and horrific crimes. The theater shooter in Aurora, CO was also suspected of having Asperger's, which made this even more devastating to the ASD community. As I read through media posts over the past week my heart was broken as I read comments by people saying that the only reason this happened was because he had Asperger's or that he did it because he was Autistic. Then I began reading posts by parents who's children are on the spectrum and were being bullied even more because of their ASD or siblings who were being questioned if their brother or sister were going to kill everyone and on and on. When I read the news and watched the footage of last week's attack at Sandy Hook all I could do was sit and cry because of the loss of so many innocent lives who were cut so short and for what their parents were going to go through. It was close to home. My own son at that very same time was sitting in his Kindergarten classroom oblivious to the horror going on in CT. My heart broke. Then a different kind of heartache came.

I have always known and, as best as I can, tried to prepare myself for the inevitable speculations and bullying that Judah will most likely face one day. I have, on more occasions than I like, had to face people who were ignorant to what Autism is and why my son if the way he is; but never before had it ever crossed my mind that people would one day worry that my child would be capable of committing horrific crimes because of his ASD! This week, I was made more aware than ever before of how little education there has been for the general public on ASDs and how they impact the lives of those that live with it. Yes, Judah has meltdowns. Yes, some of them can be "violent". Yes, he has a hard time expressing and reciprocating proper emotion to those around him. And, yes, he has a hard time understanding that his actions can cause others physical pain. It is all part of his ASD and will be a part of his entire life. It's just the way his brain is wired. However, he is not SICK! ASD is a neurological difference and not an illness. There is no cure and there isn't a specific known cause. There are theories, but nothing definite that causes ASD. Medication can't change the way his brain in wired or the way he processes the things around him. When he does have a "violent" meltdown, it is not because he wants to hurt anyone around him nor is it premeditated. It is because he is terrified of what is going on around him and doesn't know how to respond to it. It is always out of spontaneous raw emotion and a defensive reaction to the changes around him. Judah is 100% incapable of premeditating any kind of violence against anyone. When he does accidentally hurt someone with his actions, he is devastated - usually to the point of tears and hiding! Not long ago his teacher and I had to have a long talk with him because he was playing too rough with one of the other boys in his class pretty frequently and hurting him. Judah was devastated when he realized he was hurting his friend and so embarrassed about it. He even insisted on taking him small gifts and pieces of candy for a week to make up for it. Judah is one of the most loving and caring people I've ever known. He doesn't always know how to put that into words or proper actions, but he deeply and wholly cares for the people in his life and is completely incapable or premeditating a violent act. He is even compassionate to strangers around him and frequently offers to give his own belongings to those in need or offers to help others when he realizes they are in need. He not only isn't able to fathom hurting those around him, but it would be so far out of his routine and schedule that he couldn't handle it.

Larry and I made a point to not expose our kids to any of last week's events and to shield them from the horror that occurred. There was no need for them to know at such a young age or to cause any anxiety for them concerning school, especially Judah. As far as I know, they know nothing about it and we would like to keep it that was until they are much older. With that said, as the mom of an ASD child it is now a huge fear that Judah will one day be associated with a mass murderer simply because they possibly share the same diagnosis. As a parent, that breaks my heart more than words can express. Any parent can tell you that they want to protect their children at all costs and want to shield them from any form of torment or harassment in their lives, however, this week I realized I may not be able to do that forever. We have always been very open about Judah's diagnosis and most kids at his school know that he has Asperger's. Our hope was to educate people in our community about what ASD is and how to interact with those with it and also that even though Judah is Autistic, he is still a normal kid like everyone else. He just has to wear tagless clothes, eat one food at a time (and they can't touch), chews of teething rings when he is nervous, hates trying new things and has to religiously live by a routine :)

I guess when it comes down to it, the reason I felt compelled to write this post isn't because I think any of you reading it would think Judah was capable or doing horrible things but because we need your help. I am only one mom and can only educate so many people on my own. The fact is that last week's shooter may actually have had Asperger's, but that wouldn't cause him to commit such a horrible crime. Statistics have consistently shown that people with ASD are 50% more likely to be the victims of violent crimes than non-ASD people and that much less likely to commit a crime than the general population. Two of the most compelling things I saw this week were Youtube videos posted by 2 people with ASD and their plea for people to not see them differently because of their ASD. I have to admit that I cried through them because I knew that one day my own son may have to make that same plea if things don't change. 

 What I ask of you is that you share our story with others, that you inform people about how caring, intelligent and amazing Judah and others with ASD are and that you stand up for my son. I read one story this week of a 12 yr. old boy that stood up in the middle of his school assembly and defended the ASD community to another boy who stated that last week's events happened because of Autism. He is a very shy and quiet 12 yr. old and his mother stated that it was VERY out of his nature to do something like that; but he did because his 10 yr old brother has a sever form of Autism and he stood up for his brother. That boy is my hero! He stood up for his brother, who can't even speak for himself. He stood up and educated an entire middle school on what ASD is and how it affects their lives. He inspired me to do the same. I'm not in the middle of a gym, but this is my way of standing up for my son, for my friends' kids and for so many other who can't do it for themselves. Will you stand with me?

Here are two great videos from this week...

My name is David: http://youtu.be/C_O0vRTkaaY

I have Autism, please don't fear me: http://youtu.be/VQIQkdo381A

Where has the time gone?

 Today marks a very special day in our lives. It is the anniversary of the day that we welcomed our first child, Judah, into the world. In other words... it's Judah's 6th birthday! As I was sitting last night and thinking about the past 6 years and everything that has changed in our lives I was overwhelmed by how blessed we have been and how far we have come. 

As I've said before, Judah's start was a pretty rough one and one that we, at times, weren't sure we would get through. Looking back it all makes sense, but at the time was very overwhelming. Through it all, though, I learned that I am so much stronger than I ever thought and what it really means to do anything and go to any length for your child. By the time he was a year old, I felt like I was on a first name basis with everyone in our doctor's office and most of St. Mary's Hospital!! haha Things seemed to "level off" some by the time he was 2 and we were finally able to breathe a little. Then we started noticing some things were different about him. His younger sister, Hannah, was starting to do things he had never done; like crawling and walking before a year old, being affectionate with people outside of her immediate family and a select other few, pursuing playtime with other kids and so on. The older they got the more we noticed differences between the two, but still thought it was just differences in personality. 

By the time Judah reached 3, we really started noticing the differences between him and other kids. In some ways That is when I started talking to our family doctor and she began watching him closely. Since we were in the office so often, she felt like family to us and was able to get a really good look at him and the way he did things. Bythe time he was four she agreed that there was more going on than just "normal boy stuff" and referred us to St. Mary's Center for Children. Yet another doctor to add to the list! haha Once we finally got the ball rolling, it felt like it immediately turned into a snowball rolling down a mountain. After working out the insurance kinks we were finally set up with another office and in April 2011 Judah was officially diagnosed with Asperger's and separation anxiety. That was the moment that so much of his life so far began to make sense. I began understanding why he would melt down over wearing certain fabrics, why his foods couldn't touch, why he would sit for long periods of time in small dark places, why he would get so upset over loud noises, why he was hyper-focused on certain topics like animals, why he often didn't make eye contact and the list goes on and on. We also began realizing all of the amazing talents that came with his neurological differences too; like the fact that he is able to see or hear something once and remember it for life which makes learning new facts insanely easy for him. 

Even before getting the official diagnosis I was reading everything I could find on Autism Spectrum Disorders (ASD) and trying to find anything and everything to help Judah adjust and cope with the world around him. By the end of the testing process I kind of felt like I had been through medical school! A whole new chapter of our adventure began at that point. I began setting things up with the school corporation to get him in speech therapy to work on his delayed social skills and to work on emotional expression and response, set up his IEP and so on. He loved going to speech and we began seeing a huge improvement in him. He started being able to recognize other's emotions and was able to respond to them without our prompting. It was huge for him! He still had good days and bad days, but he good were starting to outnumber the bad. He was still in preschool then and loved it. Drop off wasn't always so great and he was carried in tears a lot of the time, but once in class he loved it and picked up every new skill and lesson they gave them. His only issue came when he learned something the first time the concept was presented and was then bored every time they repeated it. He just couldn't understand why they kept repeating things he already knew :) That was when he found ways to entertain himself... usually not the best idea. haha He was adorable as Santa in the Christmas program that year and even had a "friend" birthday party for his 5th birthday complete with a bounce house and all. He did great at his Pre-K graduation in the spring, too. We were also able to get set up at St. Mary's Center for Children again and began meeting with a great psychologist on a weekly basis to help Judah learn to manage his anxiety and work through his emotions without having so many meltdowns. He loved going and seemed to learn a lot. Then summer came...

The summer started off pretty well this year and he seemed excited about going to Kindergarten in the fall at first, then the reality of a new school and all of the accompanying changes set in about half way through. Needless to say, he is NOT a fan of change. We were able to keep his distracted with summer camp at his preschool, which he loved going to and had so much fun at. He also did swim lessons at the city pool again and was swimming like a fish by the end of the 2 week session. (He loves water!) During the summer we also suffered a devastating loss in our family when Larry's grandpa Tom passed away. Judah took it very hard and had a very hard time processing all of it. From all appearances it didn't seem to phase him in the least, but that was the point that he began having unexplainable frequent meltdowns and very frequent bathroom accidents again. At one point I had to just start putting him in pull up at home again to avoid more messes. It was so hard to watch him go through that and not be able to make it better for him. We were so blessed to have his psychologist and they spent many visits talking through it and helping Judah figure out what he was feeling and how to put it into words. 


Things seemed to be getting better and then it came time to get ready for school. One day he informed me that he was just going back to preschool and not to Kindergarten :) The closer we got to the beginning of the year, to more frequent the bathroom accidents got again and the more meltdowns we had. Thankfully the school and Judah's teacher were great about letting us go in and visit a couple time before school started to see his classroom and wander the halls without anyone else there. It seemed to put him much more at ease with the coming changes and make him feel much better. The first couple of weeks were touch and go, but we made it through. We quickly learned that he did much better arriving at school after everyone was already in the classrooms and the halls were empty and the school was very quick to put that in his IEP and accommodate him. We also learned that he is insanely fast and can run from his classroom and out to the parking lot before anyone knows he's gone! That was scary!!! He made it out twice, but his teacher and aid quickly came up with a plan and were able to get him into a routine that kept him from wanting to run away every day. We have been so blessed to have him with a teacher and aid who have gone out of their way to help him and make him feel safe and comfortable there. I even think he has developed a little crush on his teacher :) I get so many good reports about him and they seem to love having him in class. He definitely has his fair share of tough days and has had to "pull his stick to red" (the discipline scale they use - meaning he looses his 2nd recess and had to be reprimanded many times) more than a few times, but has overall adjusted to kindergarten really well. We were even able to drop speech therapy during school because she thought he was doing so well that he doesn't need it anymore and didn't want him missing any more class than needed. During the beginning of school we switched to a new psychologist because his took a new position out of state; but we really love his new one and she is great with him. She has worked so hard to come up with a great plan for him and he has made great strides working with her on a weekly basis. He was also able to join the Boonville swim team this fall and is becoming a great swimmer. His coach is amazing and has the patience of a saint with him! the water seems to relax him and help him regroup so I really look forward to Tuesday and Thursday nights. He also sleeps great those nights :)

His IEP review went really well this year and we are in the process of making some changes to it. Right now he rides the Special Ed bus 3 days a week because we felt like the "big bus" (as he calls it) would be too overwhelming for him. He didn't fair very well riding it for their fall field trip and I was even with him. The problem, though, is that he has to miss about 40 minutes of school on those days because his bus leaves much earlier than the regular buses. The school corp. Autism Specialist is working very hard with us, though, to find a way to make adjustments so he can ride the "big bus" without being overwhelmed or causing more anxiety for him. We are hoping to have everything in place and make the big switch after Christmas break. So far Judah seems to be warming up to the idea. 

Now that we are getting in the full swing of the holiday season we have noticed some "steps backwards" for him and experienced the worst meltdown we have ever had with him just the other night. At one point I was even in tears trying to calm him down while my mom and I had to physically restrain him so he wouldn't hurt himself or someone else. It was absolutely horrible and I pray we never have another one like that again!! In November the insurance company made some changes without telling us and he wasn't able to meet with his psychologist for a whole month, which through off his entire routine. He has had multiple big bathroom accidents in the past couple of weeks (2 of which were at swim practice... wet swim trunks and bathroom accidents aren't a good mix!) and has been much more withdrawn, which is so hard to watch. Thankfully we were able to get back in with his doctor on a weekly basis again and she is hard at work getting him back on track and giving us more tools to use at home to help him. I absolutely love her and am so thankful we have her. 


Our family has been so great to help through all of this too. I don't know what I would do without my parents... mom, especially. She has been able to calm him down at times that I couldn't think of anything else to do and they have taken him with them so many times to give me time to take a breath. I feel so blessed to have such an amazing support system and know that Judah wouldn't do as well as he does or be the amazing kid that he is without all of our family. I have realized in the past 6 years that it really does take a village to raise a child - especially one with ASD!! lol

However, there are days in the middle of the chaos that he comes home from school and just wants to sit on the couch and cuddle with me. Then all of the stress, craziness and exhaustion just disappear :) There are days when I'm at my wits end and think I'm going to end up pulling my hair out, but they are by far outweighed by the days that he looks at me, smiles with his bright blue eyes and huge dimples and says "I love you, too". Those moments, no matter how scarce they may be, make every other crazy day worth it! The past 6 years have, in many ways, not been what I had expected or even dreamed about when I was pregnant with Judah; but looking back at them I can honestly say that I wouldn't change a thing about them. Through him I have learned what it really means to love with every fiber of your being, that I am so much stronger than I ever knew I was and more animal facts than I ever thought I would know in this lifetime (and I'm still learning more). I have learned to be flexible and live by a routine all at the same time and how to laugh at things that would otherwise drive me crazy. Most of all I have learned that big blue eyes, dimples and a simple "I love you, mom" can make everything bad in my life meaningless because it means that my beautiful boy is healthy and knows that he is loved; so I must be doing something right in all of this. 

I am beyond proud of the amazing person Judah is and who he is becoming and know that he is going to do amazing things in his life because he has been given the gift of Autism.