Thursday, December 19, 2013

One Crazy Summer!

I'm going to skim over a few years of Jackson's life because, well, that's just what happens to second children most of the time. Jackson seemed to be pretty typical at first and he gave us great eye contact, so we were excited that we might have a neurotypical child. I was especially hoping for this because I worried a lot about who would take care of Braden when Jeremy and I aren't around anymore. As he got to be about one year, I began noticing little things. Things that I had seen Braden do that were red flags for autism, but I kept telling myself that maybe he saw Braden do it or something. (Even though I knew better, Braden had not done those things for a long time but we like to hope for the best and delude ourselves about things sometimes.) Around one-year, he still wasn't talking, or walking. We ended up in a research study being done by the University of North Carolina on an experimental early intervention treatment program for children at risk for autism. Having a sibling with autism, pretty much guaranteed that we were going to be chosen to participate in some part of the study.

They did a number of evaluations on him when he was a little over a year old. He had delays. It was beginning to confirm my fears, but he was still so young and we were going to participate in this experimental intervention, so I had hopes. He would do the intervention, which was someone coming to the house once a week to work with him, and we would do that for one year and then he would be evaluated again at two-years old. He began walking finally at nineteen months. Now, fast forward through the year of therapy and we come to the summer of 2013 it's one we will never forget.

The summer of 2013 I decided I really wanted to visit my family in Arizona. Not just a short visit, I wanted to stay for at least three weeks or more, so I planned to drive across the country with the kids (cheaper than flying) and stay for the duration of Braden's summer break. We would be there for a little over three weeks. Jeremy was going to drive out there with me and stay for a week, but then fly back for work and I would have help from my sister, Sarah on the drive home (I'm not crazy enough to attempt the drive by myself). We planned to leave on June 28th and return on July 22nd or 23rd depending on how long the drive took, so I would be there for most of July. Trust me, I have learned my lesson and will NEVER visit during the summertime again! After being gone for almost three years you actually forget how dang HOT 120* is; it made me appreciate the beauty, and even the humid summer heat when I got back.

Jackson was scheduled for his second set of evaluations, which would include a psychologist and the ADOS (the test they do to test specifically for autism symptoms), at my request, because by this time, I was fairly sure he was somewhere on the autism spectrum. I was still holding onto a kernel of hope that he only had developmental delays, and we would be able to get him some help and he would "catch up". His evaluations were scheduled for Friday, June 14th, but he suddenly began running an unexpected fever that week and they didn't want to do the evaluations when he wasn't "at his best" so they were cancelled. (This was intervention on God's part. You'll find out why in a minute.) That same Friday, I got up and my stomach wasn't feeling very well so I was grateful I didn't have to sit through four hours of evaluations that day. I had some pain in my upper abdomen. I dropped Braden off at school and by the time I got home, the pain had doubled, and I was not feeling well at all. Jeremy came home from work and I was lying on the couch because by then I was feeling nauseous. He had me eat a little something to see if it would help the nausea, but I immediately threw up, it made the pain triple and I couldn't get off the bathroom floor. I threw up a few more times and at that point, I was crying and lying on the bathroom floor. Jeremy packed Jackson in the car and practically carried me to the car and we went to the local urgent care. By the time we got to the urgent care, I was in so much pain that I couldn't walk. The doctor came in to see me and I was literally shaking from the pain and could barely talk to him. He immediately told Jeremy that they were not able to give morphine to patients and there was obviously something very wrong, so they called an ambulance to take me to the hospital. Anyway, after several hours in the ER, and a CT scan, they discovered that I had appendicitis, which made no sense to me because most of my pain was in my UPPER abdomen. I had my gallbladder removed years ago because of gallstones. They discovered the gallstones when I went in thinking I had appendicitis because of pain in my LOWER abdomen. My body is just all messed up like that. So, by ten o'clock on Friday night, my appendix had been removed and I was in recovery, but I was really worried.

We were supposed to leave for Arizona in two weeks! Jeremy couldn't take the time off to help me recover. We would need help from someone, but who? Then we had an idea. The kids in Arizona were off for the summer and we had a niece who was seventeen and would be more than capable of helping out. We called to see if she would be willing to fly out and stay with us and then drive back to Arizona with us in two weeks. Thankfully, she happened to have nothing to do for those two weeks and was willing to come. We flew her out here to help and thank Heaven for her! She will be blessed for her service, because there is NO WAY I would have been able to get ready for the trip, take care of the kids, and all the other crazy things I end up doing all day without her. She was a champ! I think she got a little taste of what my life is like, and I think it opened her eyes a little and she learned a lot about autism and about all the little things our mom's do for us. She is an amazing young woman and I am so proud to be her aunt. Her parents have done an amazing job with her, and ALL their kids. I was grateful to get to see her so much and get to know the young woman she's grown into. (We had never spent this much time with each other before)

I have many people to be thankful for during that time. My neighbor, who I called and woke up at five o'clock in the morning the Sunday after my surgery because I had begun throwing up uncontrollably, and had to go back to the hospital (my niece wouldn't be in until Monday). She came over and stayed with the kids while Jeremy took me back to the hospital. I ended up having to spend another night in the hospital because they wouldn't let me leave until I could keep something down. (Throwing up after surgery is the worstthing…EVER!) I had people from my church bringing in dinners and taking care of the kids. The mom of one of Braden's school friends, offered to pick up and drop off Braden from school for the rest of the year. That was SO awesome of her because I knew Jeremy wouldn't be able to and I think my niece, though she could drive, wasn't that experienced and I would be on pain killers so there's no way I would be able to drive him. I was very thankful for her willingness to do that for me. My point is this, my last post was about compassion and service. Without the compassionate acts of these wonderful people, I honestly don't know what we would have done, and it would have put a burden on our shoulders that I can't imagine trying to bear alone, especially Jeremy. He does so much to help out already, that I'm sure it would have been more than even he could handle.

June 28th rolled around and we packed three adults, two children, and all of our luggage into our highlander, and headed for Arizona. Let me tell you a little bit about traveling with children who have autism. You MUST HAVE: movies, snacks, little surprise toys as rewards for good behavior, earplugs and a whole lot of patience. Normally, the drive from Raleigh, NC to Phoenix, AZ would take a minimum of three days. Mine and Jeremy's philosophy on this was, do it fast and furious, like ripping off a Band-Aid. We made it in two days. Yes, the drive sucked, but at least it was comparatively short and my kids don't do well at hotels. My niece and I gave Jackson the nickname of "butt-face" because he "slept" between the two of us and one of us always woke up with his butt in our face. Anyway, it was a great visit, aside from all the sunburns. The Drive back was about the same. My sister quickly realized that it was best to…just keep driving…just keep driving (you get the point, right?).

Braden started school about four days after I got back so I had to get him ready to start school, meet his new teacher, buy school clothes and work out transportation. They switched him to yet another school and it was about eight miles away, so, I bit the bullet and decided to try the transportation one more time. We also had rescheduled Jackson's evaluations for the second week in August (about two weeks after we got back). We went through the four hours of evaluations, and endless questions and testing. At the end of it the psychologist, speech pathologist, occupational therapist and someone else, sat us down and gave us the run-down of what they learned. SPEECH: He's severely delayed and may have apraxia (we'll discuss that later) OCCUPATIONAL THERAPIST: He has definite sensory processing disorder (SPD) (we already knew that though.) PSYCHOLOGIST: He qualifies for a diagnosis of Autism. THUD! That was the sound of my heart dropping. It has become the craziest summer I think I've EVER had. (below are a few pictures from our visit)




 
Braden LOVES dogs and cats and especially Grandma's dog Rusty, but Rusty is getting a little old to tolerate so much love anymore.


Stabbed myself in the hand accidentally (I'm a very accident prone person in general). Couldn't feel the tip of my middle finger for at least two months.
 



The Lone Braden on the drive back from Arizona


Jackson being cute with Grandma's Glasses



 
Jackson is such a sweet boy, I don't know what we would do without him. He truly completes our family.

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