a rough day

Well, today didn't go well. At least, it didn't start out well. We got to church and Johnny was refusing to sit with me, instead insisting that he be alone in the back. Since that wasn't going to happen, and he began to scream, I carried him out of the service and into a private room that is usually dedicated for prayer groups. Holding the door shut so he couldn't escape, I spent a good 15 minutes trying to calm him down. He began to get even more upset when he realized that the first song of the service was over and the other kids had removed themselves to the downstairs for Sunday School. He was insistent that he couldn't go down until he experienced one song in the sanctuary as well, but when I suggested that I take him back into the service with me for a song before escorting him to class, he freaked out even more because the other kids had already left. Finally when I got him to calm down, we went into the service long enough to grab Steve (because Johnny needed his daddy) and head back out of the room.

Johnny continued to freak out for a little while longer, but we finally got him to agree to go downstairs to see what his class was up to. Of course we arrived just as they were finishing their own song, (they're practicing playing the bells and drums for a children's program that is coming up) and Johnny lost it again. HE wanted to play the drums and HE needed to be the only one with a special role and HE didn't get a chance to play. Steve and I had been trying to explain to him all along that he needed to join back in as soon as possible because he was going to miss even more things, but he hadn't believed us. The second missed song of the day just made things all the worse. We were fortunate that one of the women who has been working with the children was nice enough to sit down on the floor with us and have a chat. She explained to Johnny that the next practice is two weeks from today and that he could bring his own drum from home and play it. After he argued with her for a few minutes, we finally got him calmed down. I asked him if he wanted to stay and join the class or go home and relax, because he was obviously having a really rough day and I was a little worried about leaving him with anyone else. He opted to go home.

I sent Steve to pull the car up to the door, but halfway down the hall with the kiddo in my hands, his shoe fell off. The world ended again. He began to freak out, and I told him I would go back for it because there was no way I could make it to the car if I didn't just keep going. He is getting heavy! By the time I got him out the door, he was kicking my shins and hitting me over the head repeatedly. Steve took him to buckle him in his seat and I went back for the trail of things we had left behind by that point: his hat, his coat, and his shoe. Even after I got in the car, Johnny was still flipping out. He wouldn't let us strap him in, and since the harnessed car seat is in my car and there is only a booster seat in Steve's, (the harness ones are seriously like 10x the price and we only use his car every so often, so we didn't invest) we just had to wait him out.

It seemed like we were sitting there forever. He threw himself all over the place, eventually climbed into the front seat, and was messing with the locks and buttons. He insisted we go inside so he could join his class, but there was no way I was taking him back in at that point. Johnny was still beyond hysterical, and we really just needed to go home. When he calmed down enough for me to strap him in, it was about 12:30. The church service had started at 11:15. Once we got him home, we bundled him up in all of his blankets, piling on all of his stuffed animals and turning on a movie to cuddle to. Steve made him some pancakes, (Johnny's ultimate comfort food) and we even let him eat in our bed. While I contemplated the wisdom of doing all of these things and the possibility that they would be seen as a reward for his actions, I did have a conversation about how he had made some really poor choices at church before ever letting him settle in at home. I just know that when I have such a horrible day, all I want is a comfortable place to curl up with tons of blankets and pillows. Johnny was very obviously having a bad bad day.

After all of his relaxation, Johnny seems to have mellowed out. We have seen the reemergence of his behavior a few times, but they have all been short-lived instances and he even ended up eating the dinner he had sworn he wouldn't EVER touch. A bath is all he has left for this evening, and then he will be off to bed. I didn't push the nap issue this afternoon because he did spend so much time relaxing and I really can't afford for him not to sleep well tonight.

Poor little dude. Rough days suck.

sick days

I updated my blog design! Can you tell that I'm home sick and don't have the energy to do much else?

Alright, I'll admit it, the other thing I've been doing is planning Johnny's 5th birthday party. As I have mentioned before, Johnny's birthday is probably my favorite event of the year. I used to be a complete Christmas nut, but ever since we lost the baby I was carrying that was due on Christmas day in 2012, the entire holiday season has become a bit hard for me. But, being the overenthusiastic holiday planner that I am, I have refocused my energy. I really always have been quite psyched about his parties, but it seems that they have become more exciting for me than in years past.

Today I've been working on VIP Party Passes to send out as invitations. They are each personalized and will have to be done largely by hand because we don't have a color printer. I've done all of Johnny's other birthday decorations by hand in the past, so this isn't anything new. I kind of enjoy the zen of being detail-focused and coloring things while playing a television show in the background. Right now I'm not to that point yet. So far I've been working on designing the passes on the computer. Once they are done, they will be printed out, (a front that is specific to each child with different characters, the back containing the party information for parents) colored, the front and back will be attached to one another, they will be laminated in an ID badge holder, and then completed with a lanyard. They will serve the dual purpose of invitation and name tag for the kiddos that come to the party. (Johnny finally has enough peers this year that the number of kids in attendance might be quite high!) I'm having entirely too much fun with this. Johnny is super excited, though. He knows his birthday isn't until April, but it was pretty much impossible to keep him from seeing what I was working on, so I went ahead and told him. He has been helping me with them now!

Steve got off work earlier than usual today due to a strange week schedule, so he has taken the kiddo over to his parent's house to watch some sports game. Football isn't over yet, is it? What about basketball? I have no idea... I'm just grateful that he has taken the kid somewhere that will involve playing games and expending energy, as I've not been any good for any of that these past few days. We did work on cleaning up his room and then set up the new Jake and the Neverland Pirates ship/tent that he got from my mom for Christmas. It involves a mini basketball hoop, and Johnny was using his plush Angry Birds to score some points. 30 minutes of doing that from my place seated on the floor and I was exhausted. To my surprise, Johnny continued on for another half hour all by himself. I have been blessed with a very compliant and well-behaved child today. He even took a nap this afternoon!

Well, even typing this has involved exertion. I think I shall wander on down to the kitchen for some yogurt and then take another nap...

my former love

So, one of the things I have always loved most in the world is to spend my free time writing. The other day, I started digging through the archives so-to-speak, and I came out with three "books" I have worked on at various times in the past 10 years that each have about a 3 chapter start going. One of the common threads I noticed throughout my writing is that no matter when it was written, (one was 10 years ago, one was right after Johnny was born, and the last one I started a year or so ago) is that they are all targeted toward a similar audience: one I had never read for myself. I find it funny that while I never really read YA books, I seemed to have focused my own writing in that direction. I'm a firm believer that you can't write what you don't know, yet it appears I had been trying to do so.

Growing up, I began reading at a young age. I was three, and by the time I hit kindergarten, I was clearing out the library shelves of all 64 Nancy Drew books. Elementary school proceeded with many of the literary classics including Sherlock Holmes, Wuthering Heights, Othello, and The Picture of Dorian Gray... really, a broad range of literature in addition to some Agatha Christie and other mystery/suspense novels. Middle school involved much of the same, and by high school I had already read all of the required texts and was moving on to more contemporary adult literature. However, there were three (rather large) genres I refused to explore: fantasy, sci fi, and YA. Fantasy wasn't literal enough for my black-and-white brain, nor was sci fi, though it was marginally better in my opinion, and YA never caught my eye because I had surpassed that reading level at such a young age. To be honest, I remember a handful of children's books that I "read" only because they were ones that we had to read for school. I don't think I ever would have picked up The Boxcar Children or Island of the Blue Dolphins unless I had been forced. The only books specifically marketed to children that I remember choosing of my own accord were the Little House on the Prairie books and the Mandie series, and those were very early childhood at best. While my friends were reading Amber Brown is Not A Crayon, I was off reading Dickens. When it came time for YA, I just skipped the genre. It bored me.

The thing is, YA is probably the easiest genre to write for. At least, in my opinion it is. There isn't the pressure of coming up with something more "adult", you don't feel like you're competing with the likes of Faulkner to come up with anything brilliant, and it has the most versatile audience. While supposedly aimed at young adults, I know of many men and women (though usually women) who read YA. I also know that the genre sometimes even reaches as young as 8-10 year olds. Think about most of the biggest hits in recent years: Harry Potter, the Hunger Games series, the Divergent series, Twilight, and more are all YA. Granted, E.L. James rocked the boat a little and snapped some heads back in the direction of *adult* reading, but the majority of popular series were either written specifically for YA or could easily be included in YA.

As I have looked over all of my writing, (editing along the way because I can't help it, though I was pleased to see that none of it needed too much work) I can gladly say that I am excited to get back to work. In the past year, I have made a point of reading a lot of popular YA. Within the last week alone I have read the entire Moral Instrument series, though the 6th isn't set to come out until May. I feel confident that with all of this new exposure to popular books that were recently written to the same audience, I might actually stand a chance of producing something worth reading. I'll never be Steinbeck, but at least I can put together a comprehensive book that might interest more than just my family and friends. (Let's face it-- obligatory readers are wonderful, but they aren't always the best judge of your writing because they tend to want to please you instead of actually criticize it all the way you need them to!)

So, I'm off. I'm going to get back into my writing (when I can, between the kid, school, and everything else going on) and see what happens. I feel cheesy sometimes telling anyone that I'm writing a book because, after all, anyone can write a book... it doesn't mean it will be any good. Anyone can try, but getting published takes a bit more. Well, with the exception of Stephenie Meyer's work, because that woman can't write to save her life. She just smashed together a bunch of other popular work into one concept and prayed it would stick. To half of the world's amazement, it did. I can't read those books without trying to edit everything as I go. You'd think her editors would have caught the countless mistakes... I digress.

I'm back to writing! Maybe, just maybe, I might actually have something worth reading when I'm finished.

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!