The Medication Roller Coaster

As a therapist I have a strong belief that children, and anyone for that matter, should not be medicated until the issues for which you want to seek out medication interfere with your day to day life. This said, when David was about 4, my husband and I were going out of our minds trying to figure out how to deal with him. He was constantly everywhere, he couldn't sit still, struggled to listen to basic directions. So we as parents were faced with the "do we medicate" question. My best friend gave me the best answer, "are we making are life easier, or his?" We took that to heart and while at the time I felt the answer was both. I mean seriously I was ready to kill him some days and if meds made my life easier it would naturally extend his life. But in reality, it wasn't about him. He struggled at preschool, but he was able to make it through the day. He had few friends, but they had been the same few friends from some time. Overall, he was fine.

When he was five and started kindergarten, we reevaluated. Two weeks into school we got a phone call saying that they wanted to call an intervention team together for David because of his disruptive behavior in the day. At that point, we realized that his behavior was effecting his ability to learn and to make friends so we started the medication roller coaster.

During the past few years there have been a few changes to David's medication. He has mainly been on a stimulant for his ADHD. And while we have had to go through a few we have had good success in their ability to control David's impulsiveness. Last year we went through a major upheaval to his medication after adding Zoloft under his previous psychiatrist's recommendation. A medication that due to his past history of seizure he should have never been on. He ended up collapsing of exhaustion at school (He was only on the medication for 2 weeks). We spent four months trying to figure out what what wrong with our child. We saw every doctor under the sun; sleep specialists, neurologists, allergists, etc. And what we found was that he 1) has a huge sensitivity to medication, 2) has a sleep disorder 3) and most importantly he has never been the same.

This fall David became very violent with himself. While he has always head banged, he became worse and he began scratching himself to the point of drawing blood. His tantrums also became violent. We had to do something and we considered hospitalizing him because nothing we did was keeping him safe. Ultimately we decided to change his medication, or more correctly add a medication. We also began our journey towards our diagnosis on spectrum. And most importantly we found a psychiatrist who is invested in our son, returns phone calls when we are in crisis, and has a better handle on spectrum diagnoses.

In December when we finally got to meet with our new psychiatrist he started David on a new medication (actually added) with the hopes of getting rid of two of his other medications. David initially did great! We were seeing a whole new kid and then he got Steven-Johnsons syndrome (WARNING... if you decided to Google this be ready to see some graphic and disturbing pictures). So naturally his medication needed to be stopped immediately. After two weeks off medication (oh the joy!) we started a similar medication to the one he was allergic to. We have seen some improvement but have to change from the regular form to the extended release due to sleep issues. Finally after 3 months we are starting to see a regular improvement. So what do we do, we change it up again. GRRRR! In order to help with the sleep issues we are in the process of changing the timing of the dose so it is currenly split up morning and night, trying to see if moving it to the morning helps some of the sleep issues. We shall see.

I have always believed in better living through chemistry and I know with David we have seen the light we just have to ride the roller coaster until we find it again!

Follow Up: Birthday Parties and Social Awkwardness... What's a Mom to Do?

After writing my post about our experience at David's friend's birthday I got a message from my friend (his mom). She was hurt by some of my comments and observations so I wanted to take a moment to give an update on my thoughts.

Maybe I expect too much of our friends. Most of our friends have "lived" through the last six month of emotional ups and downs with us. So I guess there is a part of me that expects understanding. Understanding of what we are going through, of what it is like to field questions about David, and what it is like to face the looks from others when David acts out or the looks of pity when we have to "explain" him. It is unfair of me to expect that our friends will know and understand an ASD if they do not have direct experience with someone diagnosed on spectrum. Most of our friends do not see our children daily, or weekly for that matter and despite the fact that I talk with them regularly about life and the kids it is not the same as being around them. I as much as I want understanding from them I need to be understanding as well. I never meant to hurt anyone's feelings and I feel horrible that I did. My friends are the world for me and they have been my rock through life and especially the past six months.

I think the main thing about social settings is that David is easily disregulated and is easily left out of a group. In part because of his ASD and in part because of his temperament and general interests. Socially he is very immature and is lacking the skills most people expect a typical nine year old to have. So while a typical nine year old might know how to go and ask to "join in" with peers when they group off, my son and other kids with ASDs don't necessarily have those skill yet. David is nine and it "should" work both ways. When two kids go off and he is feeling left out he "should" go and try to join in with his friends but right now David doesn't know how to do that. It is something he needs to learn and is learning. But when it comes to social learning, his learning curve is not the same as typical nine year olds. This is particularly frustrating because David's learning curve with most things is so high. Because of this David is often left with hurt feelings, not knowing how to join in. His friends often don't realize that he is feeling left out because let's face it how many nine year olds pays attention to who feels a part and who feels left out.

The second thing is because of David's social and emotional awkwardness we are often left with odd looks, questioning stares, and actual questions about why he is acting the way he is acting, why doesn't he go join the group, why can't he ask to play too, etc. At which point we are left with our own social awkwardness. Up until the past six months we could only attribute his behavior to his ADHD diagnosis and a high emotional lability. Since getting his Asperger's diagnosis things make more sense (and less sense). More sense in that we know what we are dealing with. Less sense in that an ASD is an incredibly vast spectrum of behavior and emotion. For us, the social awkwardness is in having to explain to people, often friends of friends or complete strangers, that David has an ASD. At which point I am either bombarded with questions about ASD, David, how we found out, when did we know, etc. Or I am given the pity look. The one that says "Oh, how horrible for you" or "I have no idea what to say!" (I am not speaking specifically about this past weekend but just in general) At which point, I don't know what to say or I give my own weak smile.

The thing is, David is not someone who should ever be pitied. Nothing about him is horrible. He is an amazing nine year old boy with the whole world open to him. I don't want anyone to think he or we need to be felt sorry for. Yes he is diagnosed with Asperger's Syndrome. Yes we are a family dealing with an ASD. But those are just things about us. They are not who we are as individuals or as a family. And I think sometimes when people hear "he is diagnosed with Asperger's" or "he has an ASD" they forget that.

Birthday Parties and Social Awkwardness... What's a Mom to Do?

Today we went to a birthday party at Chuck E Cheese for a friend. The boys were really excited about going and being with their friends and spending time playing games and running around in the tubes. David was having a great time, until he went through all of his tokens. I had noticed that David was off playing games by himself, not really uncommon for him, and he seemed content. I also noticed that his best friend was hanging out with his cousin. Now I know that his best friend and his cousin are a little two some. They are best buddies and love spending time together, it was sad, though to see David struggle to find his way into the situation.

After using his tokens I told him to go find his friend or his brother to play with but instead he decided to lay on the bench at the table. When his friend came back around out of tokens I told David to go find them because now they were all out of tokens. When he did he became very frustrated and came back to the table crying and yelling at me that I "was a liar" because the kids were still playing a game so they had to still have tokens. He then threw himself back into the bench where he had been lying previously.

So many thoughts went through my mind as I dealt with David's sadness, frustration, and outburst. As a mom I want him to feel like a part of the group. I want him to have fun with his friends and enjoy his time with them. I also hate the looks from parents when they see my kid screaming at me, crying, and lying down isolating himself. I find it hard having to field the looks and question whether or not I want to go into the whole "he is diagnosed with asperger's" conversation.

I think one of the things that was particularly hard with today was the fact that the friends that we were at the birthday party of, know about David's issues, and because of issues their own children have, are very empathetic to David. And yet today, after checking in with David and finding out he did in fact feel left out, when I told my friend she said that David needs to make an effort to seek them out. I found myself becoming frustrated because this comment was so un-empathetic. Going out and saying "hey play with me instead of your cousin" is not really in David's comfort zone, something she knows. In fact, even after I asked his friend to try to include David because he was feeling left out, David was still hesitant to engage.

I guess I was also a bit frustrated that I had to be the one that had to say something to David's friend, even after my friend and I talked about it. We have talked about David being left out before in other settings and situations so it just seemed odd. I guess it is hard for other people to understand social awkwardness if we don't experience it ourselves or through our children. For me it is hard to feel like people are looking at me wanting an explanation for my child's behavior or reaction to situations instead of just allowing him, and I for that matter, be.

At the end of the day he rejoined his friends and had a great time!