Colin (hopefully) goes to camp…

One of the hardest things Sara and I have to deal with each year, is how to keep our boys occupied when they are not in school. When they were little, it was easier since they were in daycare. Now, with Sara and I having three boys between us, putting them in a “daycare” or leaving them with a sitter all summer is not exactly economically “easy” (though we will figure it out if it comes to that).

We are lucky in one aspect, and that is that I work “3rd shift”. That means, if need be, the boys can stay with me during the day. The main downside is I would get little-to-no sleep, and the boys would not get to do a lot of things outside the home since I would have to get at least SOME sleep during the day.

Last year, with Robbie in daycare full-time, we were very lucky to find a church in our area offering a “day camp” that met every weekday, for 4-5 hours each day. This camp was incredible. First of all, it was free even though we were not members of the church (though we donated several things from snacks, to money, to volunteer time), plus the kids got to do arts and crafts every week,and  the church even took them to a local water park every week. It was a really awesome camp, and the volunteers from this church were wonderful (they were even quite understanding about Colin and his difficulties).

This year, unfortunately, we are not sure if the camp will be done exactly the same way. One of the founders of the camp passed away, and while his wife has told us the camp will continue, we are worried that it will be scaled down quite a bit. We do have a bit of a plan, though, if the camp is not the same.

Sara ran across a wonderful camp called Charis Hills. It is a traditional “sleep away” camp especially for kiddos with ADHD, autism, Aspergers, and other special needs. We are VERY hopeful we will be able to afford to send Colin to this camp. Colin and I got to attend an open house for the camp this weekend, and I came away more impressed than I thought I could be.

This camp offers activities like learning the basics of archery, riflery, fishing, camping, snorkeling (good luck getting Colin in the water, haha), and other traditional “summer camp” type stuff, all for kids just like Colin. At the open house, we got to meet several other families, and I couldn’t believe just how much those other kids were like Colin.

I just know this place would do him a world of good. It’s not inexpensive to send a child there (almost $1200/week), but Sara and I are determined to save the funds required for him to go.

After getting to see the place, Colin hasn’t stopped talking about going. He probably won’t stop talking about it until he goes in July, and probably won’t stop talking about what it was like for quite a while after he comes back.

Ryan got to spend a week with my mom last summer, and that was the first time either of them had been “away” from the other since Ryan was first placed in our home. It made him feel really special. Colin was obviously a bit “jealous” that he didn’t get to go also, but he is far too much for my elderly mother to handle. This year, though, Colin will get to go somewhere special, and they will be well equipped to handle him. Heck, he’ll even be one of the “normal” kids there. Something with which Colin is not very familiar. It will be an interesting summer, that’s for sure.

Colin Stories Pt. 1 (with a lot more to come)

People ask me a lot to tell them my favorite story about Colin. It’s hard to pick one because it seems like there’s a new one every day. Whether it be a new obsession (he has run the gamut from fireworks, to tornadoes, to the game Perfection, to sprinklers, to car washes, and his latest, Animusic), or something he has said (the good day pickle story, for example), or something he has done, Colin is a walking, talking, “you’ll-never-guess-what-happened-THIS-time” kind of story.

The story I like to tell most often about Colin, though, is how he helped me get through my grief and depression after my first wife passed away. Wendy was a wonderful woman. She was very caring, intelligent, and funny, and I loved her dearly. We had a great marriage. She was, however, very ill for the last several years of our life together. She was diabetic, and had most likely been diabetic for at least 10-15 years before she was diagnosed.

She passed away on November 3rd, 2007, not quite a year after we adopted our second son, Ryan (a little more than 2 years after we adopted Colin). Colin and Ryan were 3 and 2, respectively, and I was lost. I had been taking care of Wendy and the boys by myself for well over a year before she passed away due to the complications of her disease, but being totally without her was not something for which I was prepared.

I did what countless single parents have done in my situation. I sucked it up as best I could (oftentimes failing to do so), and tried to get on with our lives. There were times, though, that my grief and depression just overwhelmed me. There were times, and I’m not proud of this, I would literally sit on the floor and cry my eyes out, not knowing how I would get through another minute, let alone another day. Sometimes, I was able to hide it all from my boys, but often, I was not. Every time I would break down, and I mean EVERY time, Colin would see me, he’d sit down with me, and look me right in the eye (something he rarely does because of his autism), and he would just say, “It’s ok, daddy. I love you.”

Colin with a disco ball given to him by his teacher for Christmas

A “special” child

It’s hard to know where to start with something like this. I want to tell my and my family’s story, plus I want to make it interesting for someone who comes across this page, but I also don’t believe I need to tell EVERYTHING about my life up to this point (it would take too long anyway. I’m 41 years old, for goodness sakes).

Since I want to kind of focus on a lot of the challenges my wife and I face with raising our three diverse children, I’ll start with the child that is our focus for oh, around 80-90% of our day: Colin.

Colin’s life started in a very rough way. True to his form, though, he proved himself to be a real fighter. He was born to a biological mother who was a prostitute, and I believe, hooked on drugs. Colin was put into the foster care system after a CPS worker found him, at five weeks old, in an apartment with no electricity (it was June, in Dallas, TX). His bio-mom rarely changed his diaper despite neighbors giving the young woman free diapers, and when he would cry because he was hungry, she would stuff peanut butter in his mouth to make him stop. This was despite the fact that the same neighbors who gave her diapers, also gave her formula. She just refused to take care of him, and left him in a car seat with no cover or padding.

So, at five weeks old, a severely malnourished, but seemingly happy, Colin (then known as Jessie-father unknown, by the way), was delivered to me and my first wife, Wendy. Soon after, Colin’s bio-mom was never seen, or heard from, again.

We noticed fairly early on that Colin was having some developmental delays. He did not sit up unassisted until he was almost a year old. He would not, or could not, sit up to drink a bottle. In fact, feeding issues dogged Colin for the first few years of his life because as a newborn, he learned that if something solid was in his mouth (like the peanut butter his bio-mom stuffed in his mouth), then he better not swallow it because he could choke to death. He was smart (and a survivor) even then.

So, with the help some wonderful therapists from Early Childhood Intervention (ECI), and another group called Therapy 2000, Colin was hitting most of his developmental goals by the age of 2. Even then, he showed a great talent for memorization by mastering matching games and putting together puzzles that were designed for older kids. I remember asking his therapists and doctors (mainly because of his receptive speech delays) if they thought he could be autistic, but they answered they didn’t think so because a) he was pretty verbal (in fact, he rarely stopped talking), and b) he did not do the stimming so many people associate with autism.

To her credit, one of my good friends, Amy (a school psychologist) said she thought he might be autistic and tried to push me to get him tested. By that time, though, I was dealing with the death of my first wife (more on that later), and I decided that I would listen to Colin’s doctors and therapists. Besides, who wants to hear their child is autistic, especially while in the grips of depression and grief?

Not long after I met Sara, she really started pushing me to get Colin more testing (he had already been diagnosed with pretty severe ADHD). We ended up taking him to a Developmental Pediatrician who confirmed the autism diagnosis in August of 2010. It was a pretty big blow at the time. All of a sudden I started picturing all of my hopes and dreams for Colin (baseball star, academic excellence, grand children) going down the drain. It really hit me like a ton of bricks, despite it being something I already knew in the back of my mind anyway.

The truth of the matter is that none of those things were lost, and the diagnosis of autism did not change who Colin is as a child. He is still the lovable, goofy, smart, sensitive, frustrating, kid he has always been (and always will be).

What’s in a Name?

My oldest son, Colin, is ADHD and Autistic (“on the spectrum” as they say). Although I hate using those terms to “define” him. He is so much more than those terms.

He is a very challenging, and very special, little boy. My wife and I are very lucky, as far as parents of  children on the autisim spectrum go. Colin is VERY verbal. That’s not to say he communicates easily, but he basically talks nonstop. He is not really able to have what one would call a “normal” conversation. Colin’s coversation skills basically equate to constant questions. Even questions he knows the answers to. ESPECIALLY questions he knows the answers to, actually. Plus, like a lot of other autistic children, Colin repeats words and phases he has heard from other people. Whether he knows what they mean (or even if YOU know what the mean) or not. This is called echolalia.

So, I don’t know exactly where the phrase “good day pickle” came from, but I can give it an educated guess. I’m pretty sure it started with one of his teachers telling Colin, “You’re a pickle”. Since Colin doesn’t really understand something like that, he thought it was hilarious that someone thought he was a pickle. He started calling people that all the time. Even upon first meeting someone, he would say, “Hi! I’m Colin. You’re a pickle!” The fact that this would usually elicit laughter (even nervous laughter from strangers) just encouraged it.

When Colin would go off to school every morning, I would call after him, “Have a good day!” He managed to turn that into “You’re a good day pickle, daddy”.

When I started dating Sara (who would become my wife about 8 months after we met), she thought it was pretty funny, too, so it soon became a catch phrase between the two of us as a way to kind of put a smile on each other’s face whenever Colin was being “difficult”.