2013 retrospective

The year has ended and we've made our way into 2014. Wednesday I wasn't really feeling the need to recap 2013 in my mind, partially because it was a rather rough year and partially because I've been in a funky mood. However, I felt that I owed it to myself and my family to look back on everything we've been through, the good and the bad:

January-- The year started off with a huge blessing and a rather hard price. While we celebrated Steve finding a new job at AT&T and were thrilled for all of the positive changes it would bring for our whole family, we began the year with a rough month-long training period that Steve spent away from home. It was totally worth it in the long run, but Johnny really struggled (and consequentially, myself as well) with the "loss" of time with his daddy. In fact, that rough start to our year is what prompted me to take up blogging again. 

February-- Steve's training ran into a good chunk of February, and I spent that time struggling to support Johnny on my own. We had yet to receive a diagnosis at that point, which meant we didn't have services for the little guy. I felt that all of what was happening with him only proved my point that he needed extra help, but we were still fighting the system to get any attention. With the help of family and a few good friends, we made it out the other side and were glad when Steve returned home. It was worth it in the end, but we really had a hard time while it was happening.

March-- With the slowly changing weather, I myself began to perk up a little bit. While I spent my time working hard with Johnny to help him learn emotional regulation and prepare himself for times when the world around him didn't work the way he expected it to, Steve began to really thrive at work. March was the first month where his sales could be tracked post-training, and he knocked it out of the park. I was thrilled to see him so happy at work, and was (and still am) quite proud of all he was doing. 

April-- My favorite time of year used to be the Christmas season. Ever since Johnny was born, it has switched to being his birthday month. I absolutely love to plan parties and this past year he turned 4 with a spectacular Angry Birds celebration, if I do say so myself. Watching his face light up and seeing him enjoy himself so much is the greatest feeling in the world to me, and I couldn't be more in love with my little guy. While I enjoyed watching Johnny turn another year older, the most important part of the month was when my pleas for help for my son finally started to be heard. We weren't where we needed to be yet, and I was still fighting tooth-and-nail for any and all help, the mental health community finally began to take me seriously. We had all sorts of assessments and evaluations lined up, and May was looking promising. 

May-- FINALLY we were able to receive a preliminary diagnosis for Johnny. With everything being official on paper, we began to explore possible services that he could receive. Steve and I literally went out for a celebratory lunch on the day we got the good news. While the psychiatrist who diagnosed Johnny sat us down as though we were getting horrible news, I don't think we could have been more thrilled. As I have ranted endlessly in this blog, there is nothing wrong with my son, his brain just works a little differently. Hallelujah! Someone "official" finally saw what I was seeing and gave us the blessing of being able to get the help he so desperately needed. I felt like a huge weight was being lifted off of my shoulders. In addition, we were given the promise of a summer camp that would help him maintain a regular school-like schedule for the following two months, which was something he desperately needed. 

June-- Well, summer camp was a joke. I was still unable to get Johnny's TSS services in place at that point, and they pulled the rug out from under me with our supposed 3 1/2 hour, 5 day a week summer program, because Johnny still wasn't potty trained. Never-mind the fact that it was at the autism school and potty training really late is a common problem in the autism community. I later found out that it was actually illegal for them to have refused us that program, and I have the director's sincere apology and promise of a spot for next summer. She apparently didn't know her underlings had turned us away, but by the time I found out that they weren't allowed to deny us, it was 2 days from the end of the program and it would have been harder on Johnny to go and then have it end abruptly. 

July-- The summer continued, still really rough because Johnny handles routine better than anything else, and no matter how hard I tried, I couldn't really provide that for him like they do at school. Add in the fact that his tantrums were so intense that I couldn't take him anywhere in public, (because I am no longer strong enough to drag him back to the car if he is freaking out) so he was spending his summer with virtually no interaction with other kids. The public pool was even too much for me to handle by myself, so we only went anywhere when I could find another adult to come with me. The end of the month brought the beginning of the National Autism Conference, which was held here in town and provided the full week of childcare during sessions. It was an extremely useful thing to attend, and as a "parent or person living with autism" (I fell under both categories) I was able to be a part of the entire week for only a small fraction of the usual cost. Johnny enjoyed a week of "camp" that was specifically designed for kids on the spectrum. He even came home with some really cool sensory crafts. 

August-- The beginning of the month finished off our week at NAC. I was beginning to get frustrated with the fact that they while they very clearly designated some sessions focused on parents, and they were very accommodating of children on the spectrum, they obviously had no real expectations of adults on the spectrum attending. I couldn't sit still for the 2+ hour sessions and got the strangest looks when I would pull out a fidget toy or need to pace in the back to be able to concentrate. You'd think a conference full of people there for the specific reason of furthering their understanding of how to handle people with autism would be a bit nicer about tolerating an adult on the spectrum. They seemed to not realize that the kids they were dealing with (most people attending were workers in child care or education of some sort) will some day grow up! I spent the last two days of the conference rather  burned out and eventually just found a place to hang out in the conference center while Johnny played upstairs with the other kids. I knew I couldn't pull him out because it was really the first good peer interaction he had experienced all summer. 

It was in August that we finally began to get Johnny in with a TSS and a BSC. It was wonderful to finally have some help! While this was a wonderful relief, August didn't end on a good note. It was close to the end of the month when I ended up in the ER for very severe pains in my abdomen. I was experiencing an ectopic pregnancy, was several weeks past the latest expected date of "survival" and had to have emergency surgery in the middle of the night. For all reasons that can be imagined, the entire ordeal was very hard.

September-- The beginning of the month was rough because I was newly post-op, but stuck with the kiddo on my own at home. All of the family members who had off work over the summer because they are in education had returned to school, but Johnny didn't start back until a week later. I've found that even now, 4 months later, I still am experiencing pain at one of the incision sites because it is right where the top of my pants lay, so it never gets a break from constantly being rubbed up against. In addition to my September physical recovery, an understandable struggle with depression ensued. Johnny was transitioning back to school quite well, but that was expected. The kid "honeymoons" with new and exciting places or activities and then tends to crash after experiencing it for a while. That lead us into October...

October-- It was around the first week of the month when Johnny finally hit the wall. No longer enchanted with school, we began the daily struggle to help him with his anger management. In addition, as with the entire rest of the year leading back to his second birthday, we continued the process of trying to potty train. This was especially something we wanted to tackle while he was still attending preschool, as it would be a rough way to start Kindergarten. They would have to send him to a different elementary school across town where they have teachers specifically to help kids on the spectrum potty train, and while the wouldn't have been the end of the world, we really wanted to get him in underwear while still at the preschool. While we remained faithful to our schedule of trying the potty at home, Johnny fought going with his peers at school and absolutely refused to go when he needed to but no one else was headed to the bathroom. I'll admit, I was a bit beyond frustrated at that point. I just didn't know how to help him any more than I already was, and we were continuing to get nowhere. 

November-- The blessed month of potty training success had finally arrived! We celebrated with a "Potty Party" for Johnny, and couldn't have been more excited! The kid now has more pairs of underwear than I've ever seen in one place in all my life. Despite this, he still seems to go through them before laundry day each week, because he changes into a new pair 3-4 times a day at minimum. I can't complain too much; he is potty trained and he is staying clean! November also saw our first Thanksgiving alone at home with just Steve, Johnny and I. We had a lot of fun exploring "new" Thanksgiving food (Johnny liked the cranberry sauce) and went to see the movie Frozen for Johnny's first real theater experience. November was our good month for 2013!

December-- As with most children, the holidays are actually kind of hard for Johnny. We were blessed (and burdened?) with 9 different Christmas celebrations with family, and while we loved seeing everyone, it wasn't exactly easy. All of the extra excitement and overstimulation can make things hard for Johnny to regulate his emotions, and at the moment we are actually looking at his winter break from school not ending until having been out for 17 or 18 days. (We still don't know if he is going back next Tuesday, as they canceled this Thursday and Friday for weather and it is supposed to be 2 degrees next week!) That is a long time to be out of his routine, and we are doing our best to adapt. In addition to not attending school, we haven't had services from his TSS or BSC over the break, (understandably) so he hasn't even had that additional help. Thankfully, his entire education team has a game-plan for his transition back to school. We rang in the new year in true Delafield style: Steve and Johnny were asleep and I was reading a book. No complaints here! 

Well, that's a recap of our family's 2013 experience. I hope you all had a good year, and I wish you the best for 2014!