Monday, June 27, 2011

The Mystery of Ian, Solved

The doctors brought up a few labels for Ian as he was growing up, but none of them seemed quite right:  ADHD, Obsessive/Compulsive Disorder, Oppositional/Defiant Disorder, General Anxiety...I forget what else. 

When Ian was about 7 years old, I heard about Asperger Syndrome, which is on the autism spectrum.  I read about it and thought, "This sounds like Ian!"  The clues were:  attachment issues, lack of sleeping when he was a baby, advanced verbal skills at an early age, sensory issues (food textures/flavors, bright lights, loud sounds, some clothing textures), being INCREDIBLY FOCUSED on one subject and knowing everything there was to know about it, talking "at" people instead of "with" them, difficulty with changes, difficulty with transitions from one thing to another (changing or stopping activities), difficulty feeling sympathy or empathy, and difficulty navigating social situations.  I brought all of this up to his psychologist, she asked me a few more questions, and Ian was finally diagnosed as being high-functioning Asperger Syndrome.

On the one hand, it was sad to know that my child had a DIAGNOSIS and a LABEL, but, on the other hand, it didn't actually change anything about him, and it was nice to know that it WASN'T MY FAULT that he acted the way he did....other than the fact that Asperger Syndrome seems to be hereditary, and I can clearly see where it has come from in MY then, technically, it WAS my fault, but it WASN'T a result of crappy parenting on my part (and, in fact, I had been doing all the right things!)!  I wish I could have known earlier because I spent many years feeling like I was a failure at parenting and wondering what I had ever done to make my firstborn child dislike me so much (I suffered vile nausea for MONTHS!  I got up with him at least EVERY! TWO! HOURS! ALL! NIGHT! LONG! for A YEAR!  I thought it was going to kill me, but I DID IT FOR HIM!).  In a way, his diagnosis was a big weight off my shoulders because I had received QUITE A FEW sideways glances and disapproving comments from people who would have BEGGED FOR MERCY if I had let THEM be in charge of Ian for ONE DAY had typical children who actually RESPONDED to the usual behavior-altering parenting measures, or didn't have children at all.  My mother, who LOVES Ian (in fact, I would dare say, he is her FAVORITE) would often say, "Oh honey, you don't have to worry about [Ian] being kidnapped!  If anyone ever took him, they'd bring him RIGHT HOME and PAY YOU GOOD MONEY to take him back!"

I really hesitated to medicate Ian, despite his CONSTANT irritating exhausting intense behaviors, because I was worried about the effect the medicine would have on his developing brain and body, but there came a time when I was more worried that he was going to hurt someone.  He had always been very irritable, became angry quickly, and had very little impulse control.  The day he tried to break David's arm with his bare hands, I called the doctor and made an appointment to discuss medication since it was obvious that behavior modification was not going to work by itself.  (I also looked into other things that might help, like changing his diet, and I read about the effects food coloring and other food additives could have on a person.

Each time we would try a medication the doctor would say something like, "Now, this medication MIGHT help with such-or-so, but he is still going to be the same child he's always been.  It might HELP, but the problem behaviors aren't going to go away."  The first medication we tried had been recommended by a director of child psychiatry.  I thought that I had died and gone to Heaven!  Ian was A COMPLETELY DIFFERENT CHILD!  He was PLEASANT, and CALM, and EASY TO GET ALONG WITH, and HE DIDN'T FIGHT OR ARGUE WITH ME ABOUT EVERY! SINGLE! THING!  I was so happy to FINALLY get a chance to enjoy this child!  BUT.  He gained 10 pounds in a month (one of the side effects of the medication), and that sort of unhealthy weight gain was going to continue.  I count it as one of my finer moments of motherhood that I did not choose to have him continue taking that medication even though I REALLY, REALLY wanted him to keep acting like he did when he took it it had made *my* life SO MUCH EASIER!

Along with trying different medications, I also took all food dyes and as many artificial ingredients and preservatives as I could out of Ian's diet.  We tried 3 or 4 other medications, but they either didn't have any effect or they had negative side effects.  It was time for us to move again, so we stopped trying different medications, but we stuck with the dietary changes.

I never was able to figure out if there was one specific food coloring or other ingredient that was causing him problems, but when I cut those things out of his diet, he did seem to be less.....I don't know.....Irritable?  Reactive?  Whatever it was, he never tried to break someone's arm with his bare hands again, and I was no longer worried that he was going to hurt someone in a fit of rage. 

I took a VERY firm stance concerning his dietary restrictions for about 3 years (ages 7-10), which was difficult when so many activities involved some sort of pre-packaged snack, and I suddenly noticed how often people try to give candy (usually full of food coloring) to children.  When Ian would ask why he couldn't have a certain thing, I would tell him which ingredients had caught my attention and that I was afraid those things were affecting his behavior;  end of discussion.  He would be disappointed or frustrated, but he also realized that his behavior was causing him a lot of trouble, so he soon stopped asking about things he knew he couldn't have.  I also made sure that I had things on hand that he COULD eat.  I have relaxed a little in the past year and haven't noticed any ill-effects.  I wonder if the food dyes, artificial flavors, and preservatives somehow irritated his immature, already-irritable, overloaded body?  Maybe removing those things from his diet gave his body a chance to mature with one less irritation to deal with and now he can handle those things in small amounts?  I guess it is another mystery....

When Ian was about 8 years old, I came up with a behavior chart that FINALLY seemed to be just right.  I had made many, many, MANY different charts in the past, but they just hadn't been....exactly what I wanted, but this one was just what I had been looking for and trying to create for so long.  This chart allowed me to give him constant, immediate feedback all day long, without me having to decide, at the moment, every single time he did something what the consequence was going to be. 
When he was TEN YEARS OLD, Ian's behavior FINALLY calmed down. 


Ten years of:
*having to carefully transition him from one activity to another:  "OK, 10 more minutes at the park/playing with Legos/coloring/watching TV....5 more minutes....1 more minute....time's up!"  And even then he had a fit when his time was up...
*having to thoroughly prepare him for every change to his routine:  this is what will happen when we go on vacation, the new baby comes, we move to our new house....
*taking ear muffs when we were going somewhere with lots of noise, like a restaurant
*taking sunglasses when we were going somewhere bright, like the dentist
*having to ask him 3 or 4 or 10 times to do something, like pick up his shirt, or clear his dishes off the table, or put his book away....

It was a long ten years.

Ian will be 12 soon.  The past 2 years have been SO! MUCH! EASIER!  (His current psychologist told me that it is often this way with Asperger kids:  they are HELL ON WHEELS really challenging in the beginning, but if you can survive once they mature in TEN! YEARS! a little, they aren't as challenging as their typical peers.)  It has been nice to be able to enjoy my child and not have to be on his case every single second be able to give him more positive feedback because he is doing more positive things!  He is still a challenge, but it isn't anywhere NEAR what it was before....which is nice because EVERY! STINKIN'! ONE! some of the people born after him are completely a little challenging strong-willed too.  We are still working on learning the finer points of social interaction, thinking about the feelings of others, and taking responsibility for our own actions instead of blaming everyone and everything around us, but it's hard to know how much of that is due to his GENDER age and how much is due to the Aspergers.

I fought off the ADHD/ADD label as long as I could, wanting to be sure that it wasn't just an issue of his age/maturity/gender, and he DID outgrow the "H", but last year I finally relented when I saw him highly motivated to do something and being unable to do it because he just COULD NOT pay attention =(.  I had still been feeling bad that the Aspergers came from my side of the family, but I can see that the ADD comes from Husband's side of the family:  we only have ONE Aspie, but we have 3-4 (it's not looking good for Baby) with ADD, so I don't feel SO bad anymore ;-)!

Interestingly:  I graduated in Special Education, but it never occurred to me that I would end up using my skills with my own children!  (And they didn't really cover how to deal with this behavior 24/7 anyway...)


Swistle said...

This was SO interesting (and funny) to read. We have a similar family tree to yours: my side has more autism/Asperger's-like issues, and Paul's has more ADHD-type issues. So far one of our children has been referred for a neurological examination ("not Asperger's, but close" was the diagnosis), and one is probably headed for ADHD/ADD testing this coming year.

d e v a n said...

Very interesting to read! I have to agree that taking him off that one drug was a fine moment in parenting. I can imagine how VERY tempting it would be to leave him on it!

Doing My Best said...

Swistle--Well, it's nice to know it isn't just my family =)!
I totally did the forehead slap when Ian started taking ADD medication that worked, and I suddenly realized that many of the times I had been so frustrated with him (usually for having to tell him over and over and OVER again to do the simplest thing) had been a result of his inattention/inability to focus, instead of purposely being a stinker. HOWEVER! This IS a very useful epiphany now that he is taking medication because when I notice that I am frustrated with him a lot, I realize that his medication needs to be adjusted.

Devan--Thank you =)!

Emily said...

I'm so glad you figured out what was going on with him and things are better. I can't imagine going through ten years like that...

Heather said...

I am going back and catching up on your blog, since I am a new friend...I really, really hope that your experience w/Ian means that I only have 9 more months of complete insanity w/A.J. It's been tough, and he's only lived with us for 18 months. I send big, big hugs to you for 10 years. I hope he continues to flourish!