Meds or no meds Part 2: change is always hard…

Colin is 100% a creature of habit and routine. He craves it; needs it, really. If his routine (or what he EXPECTS to be his routine) is changed in any way, a meltdown can, and often does, occur. Something as simple as taking a different route home than he’s used to can cause heightened anxiety, and a load of questions. 

Over the last 4 months or so, Sara and I have noticed that Colin’s meds were not having the same effect they once were. When we first went to our developmental pediatrician, he gave Colin a “booster” dose of Ritalin in the afternoon to help with the “crash” he was having after school, plus he put him on, Abilify (as a mood stabilizer). For the first year or so, it worked wonderfully. He was having fewer meltdowns, he was nicer to his brothers (most of the time), and he was doing well in school.

At the beginning of this year, though, things started going down hill. We went back to our pediatrician, and he upped the dosage of Abilify. That did not help. In fact, it made things much worse. He would cry and meltdown at the drop of a hat, and was mean and violent more and more towards his brothers. We stopped the Abilify within about 2 days.

We have gone through a couple different combinations of meds, including trying Risperidone, but nothing has really worked so far. Our pediatrician recommended we try a psychiatrist that specializes in kids like Colin, so we started seeing him about a month ago.

He put Colin on a low dose of Clonidine to help him sleep, and that has helped him some. He at least goes to sleep at a decent hour, whereas before he would be up until 10 or 11 pm, then he would wake up any time between 4:30 and 6:00 am. I have always believed that Colin’s lack of sleep is a BIG reason for a lot of his behavioral issues. Even as an infant, Colin never napped.

I believe if we could figure out a way for him to sleep longer, a lot of his behavior problems would at least get better, if not work themselves out. Colin, on the other hand, has different ideas. Sara and I basically thank our lucky stars if he sleeps past 5:45 or 6 am, which can be  especially hard on Sara.

She is with Colin, without help from me, during his most unmedicated times of the day because I work nights (10 pm to 6:30 am). Trying to get herself up and ready for work in the morning, while also making our three boys breakfast and getting them ready for school, all the while having to keep Colin in line, is probably too much to ask of one person. But, she does the very best she can, and fights through the challenges like a champ.

We are hoping that putting Colin on something stronger (and, hopefully, longer lasting) will help put an end to the roller coaster of hyperactivity he goes through on a daily basis. To that end, we have started him on Adderall, with an eye towards moving him to the extended release version once we get the dosage worked out. 

This presents a few challenges. First of all, like I said before, Colin does not deal well with change. Seeing the new pill brought up a bit of anxiety, plus a whole host of questions (What is this pill for? Why is it blue? What happened to my circle pill (that’s what he called one of this other pills)?  Etc…

Secondly, since it is a new med, we have to start on a very low dose and work our way up to the optimal dose. This causes problems dealing with his behaviors both at home and at school. We also have to file paperwork with the school so that they can give him his afternoon dose. I have yet to do that since we are not sure we will stick with this medication, nor are we sure we will even need the school to give him his afternoon dose once all is said and done.

So, for now, I go to the school every day at noon and give him his afternoon dose myself. The one benefit of that is I get a mid-day report on how his behavior is that day. It is not, however, optimal conditions for me resting during the day.

But these are the sacrifices we make for our children. Sara and I just want what’s best for Colin, and we are still not sure if Adderall is going to work for him or us. The first few days were not good, as his behavior at school was terrible (thank goodness we have some wonderful teachers and administrators here). Thursday and Friday were better, but still far from where we want to be.

This weekend, we upped his dosage once more, landing on 20mg/twice a day. This is roughly half of the total dosage of Ritalin he took for the entire day, but spaced out in two doses. His behavior was actually pretty well regulated today. When I left for work at 9:15 pm, however, he was still having trouble going to sleep (insomnia can be a side effect of Adderall). Plus, he was up by 4am Sunday morning. I KNOW that will not work for us in the long run. We’ll just have to see how it goes…

to be continued…

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Meds or no meds, Part 1: the how and the why

I want to take a moment (or much longer) and discus ADHD meds, and the choices we’ve made regarding them and our son, Colin. I keep hearing over and over again (both before and after they know my son is on meds) how doctors are “over diagnosing” ADHD, and “over prescribing” stimulant meds like Ritalin, or Adderall, etc. People say doctors just hand those pills out like candy, and what these kids need is a good spanking and some discipline. I’m sure there are some doctors out there who over diagnose and over prescribe for ADHD/ADD. I don’t know any of them.

These drugs are some of the most tightly regulated medications on the market. Prescriptions are not allowed to be called in to the pharmacy. I must obtain new “scripts” for every ADHD med my son takes each month. Until recently, the doctor had to physically see how Colin was doing each and every month he wrote a prescription (the doc is now allowed to write scripts for up to 3 months in advance). I also have to show my driver’s license each time I pick up his meds from the pharmacist due to the fact they are considered “controlled substances”. Obtaining these meds is not the piece of cake some would have you believe.

Let me tell you the story of how and why I came to put Colin on Ritalin. First though, I want to say that I have no problems with someone who decides they do not want to put their child on medication. It is NOT a decision that is to be made lightly, and I respect the decision of each parent in regards to how they want to raise their child. I expect, however, the same consideration from others.

The year after my first wife passed away, I bought a house in the suburbs and moved myself and my two boys. We were practically the American Dream personified. A couple of days after Christmas that year, I put my boys to bed around 7:30 and decided I’d try to get a little shut-eye before I had to go to work that night. I shut my door and was fast asleep. At the time, I had employed the 18-year-old daughter of one of my coworkers to sit with my boys at night while I was at work.

I got up about an hour and a half later and jumped in the shower to get ready for work. As I was getting out of the shower, I had the most frightening experience of my life. I hear someone from my living room call out, “POLICE OFFICER!”

My first thought was that this had to be a joke. I figured my coworker had come to drop his daughter off early, and had made his way into my house. “Yeah, right, Sam. Whatever”, I yell back.

“SIR! THIS IS THE POLICE DEPARTMENT! PLEASE COME INTO THE LIVING ROOM!”

Now, remember, I am just out of the shower, and am in the middle of drying myself off. I look around the corner from my bathroom (which is in my bedroom), and see two police officers with their hands on their weapons, looking directly at me.

“Uh. Uh. Let me put some clothes on…” I manage to stammer.

As I  begin to get dressed the lead officer is talking to me. “Sir, do you know that your garage door is open, your car doors are open, and your back door is open?” he asks.

“No, sir. I didn’t know”, I say as my mind starts racing. Wondering how my garage door got open, and if someone had burglarized my car, I still had not managed to grasp the full situation.

At this point, the officer says, “We were driving through the neighborhood, and noticed the garage door open, and figured we had better check up it.” Then, he looks at me and says, “Sir, do you have any children?”

Dumbass me still was in such shock, I did not really register what he was asking, or why. “Yeah, I have two boys.”

“Their names? Ages?”

“Colin, age 4, and Ryan, who just turned 4 last week.”

“Do you know where they are?”

“Yeah, they are in the back bedrooms.”

THAT’S when it started to click.

“What’s going on?”, I ask the first officer as the other officer goes towards the back of the house.

“Just a minute” he says, while we wait for the other officer. He comes back and says flatly, “Yeah, they’re not back there. I found this..” and produces the two halves of the door knob covers I had placed on the INSIDE of Colin’s and Ryan’s doors so they, theoretically, couldn’t get out.

“Yeah, I think we found their house,” the officer calls on the radio. So, to make a long story just a little bit shorter (and thank you for reading this far), apparently what happened was this: after I laid down (and shut my door to sleep for the LAST time), Colin managed to peel off the door knob cover from his door. He then got Ryan out of his room, and they decided it was “play time” in the garage. They got into the car, and were playing around when, I guess, they saw the garage door opener on the visor.

Colin pushed the button, and up went the garage door. Both boys, seeing their opportunity to make a break for it, went back inside the house and PUT THEIR SHOES ON, and started walking through the neighborhood. Thank goodness I live in a fairly nice area. They walked two streets up from our house, and walked up to someone’s house and rang the doorbell.

I don’t know if that was the only house they rang, but luckily for all three of us, the lady that answered the door had a child about the same age as my boys, and brought them inside. She then called the police. I thank my lucky stars all the time for that lady. This story could have had such a worse ending.

Anyway, it was at that point that I realized that Colin’s ADHD had reached a point where he basically had little to no impulse control whatsoever. He literally could not stop himself for one second to think, “This might be dangerous, I shouldn’t do this.” If he had an idea, he was going to do it. And Ryan was going to go along with him. I knew then and there, SOMETHING had to be done.

I also want to say that, as scary as this story is, it was not the ONLY reason I wanted to put Colin on meds. He literally, NEVER stops moving (even now, on his meds, he is in constant motion). He’s even restless when he sleeps. He never stops talking (again, even on his meds, he rarely stops talking). If he is off his meds, he has to touch EVERYTHING. Seriously. Every. Thing. Including people, dogs, cats, stuff on the ground, etc. He has a special affinity for switches and buttons, and that makes a trip to the doctor’s office with its light switches, and call buttons, and instruments to look in eyes and ears, especially fun.

So, anyway, I took Colin to an ADHD doctor less than a week after he and Ryan “escaped” from the house, and he gave me all kinds of surveys to fill out, and even had Colin’s pre-K teachers fill one out. The doc said Colin was “0ff-the-charts” ADHD, and prescribed Ritalin. We started him on a small dose, and worked our way up to a pretty heavy dose (80mg every morning) within about 8 or 9 months.

Even on that high of a dosage, it didn’t solve all of his behavioral issues, but it did allow him to go to school and not be a TOTAL distraction. We even had to get him an aide to sit with him for about a year and a half to make sure he stayed on task and didn’t disrupt the class too much every day. He still had his “moments”, but with the help of his incredible aide, his wonderful kindergarten teacher, as well as repeating kindergarten, Colin is now pretty much on grade level and makes mostly A’s and B’s in first grade, and will start 2nd grade in August.

Up next, Part 2 of Meds or No Meds, where I discuss the ongoing challenges of the medications and what happens when we have to switch or modify his dosage and/or the medication itself.

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.

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”.