I have two subjects I feel the need to address today, but I
can’t seem to find a good way to incorporate the two. Therefore, I think it
only fitting that I make a separate post tomorrow!
Today, however, I’d like to discuss the medication that
Ethan has been taking for the last few weeks: Risperidone. This is the generic
brand of the drug Risperdal. Now, there’s no nice way to say this, but it is an
antipsychotic drug. In large doses (and in adults), it’s primarily used to
treat the symptoms of schizophrenia and certain problems caused by bipolar
disorder.
In children with autism, however , and in minute doses
(Ethan takes .5 mL in liquid form at bedtime every night), it is used to curb
aggressive behaviors, violent meltdowns, and just generally improve their mood
so that they are less stubborn and resistant. Yes, there are pros and cons to
taking it, just like there are pros and cons to any other drug out there that you could take
for just about anything. Even herbal remedies have pros and cons to them!
Some people have undoubtedly wondered why we chose to try
medication with Ethan. Now, let me be clear, here: my husband and I do not owe
anyone an explanation, nor are we obligated to justify ourselves to anyone. I
am volunteering this information for other parents of autistic children in the
hope that, should this be an option they are considering, our experience will
help them decide one way or another whether or not this is a viable option for
their child and their family as a whole.
That being said: a few months ago, we noticed that Ethan was
getting more and more aggressive with Alex, his younger brother, who, at the
time, was not yet a year old. At first it seemed harmless enough: snatching a
toy away from him here, pushing him down there. We attributed it to typical
older brother behavior and resolved to just keep a closer eye on the two of
them while they played together.
But it started getting worse. It reached a point that we were unable
to leave the two of them in a room alone together at all, otherwise screaming
and crying ensued and usually resulted in Ethan being put on a Time Out in his
room, which would bring on a complete and total meltdown and would in turn
result in Ethan throwing toys at the walls, pulling things down off of his
dresser, hitting himself, scratching himself, and just generally being
destructive.
One weekend day when my husband was home, I left the living
room to take a shower. He was on the computer and the boys were playing, and
while Ethan was being a bit rougher than we care for, he wasn’t actually
touching Alex, so my husband let it slide. When I came out of the shower,
however, I heard grunting, crashes, and screaming from Ethan’s room. I knew
immediate that something had happened, so I came out in the living room to find
out what had transpired during my 20 minute absence. What my husband told me
genuinely frightened me. Apparently, not long after I’d left the room, he heard
muffled screams and couldn’t tell whether it was Alex or Ethan. He got up and
walked around the corner to the kitchen/dining room area and saw that Ethan had
his then-10-month-old brother pinned down on the floor on his back, his knee in
his chest, and had both hands covering his nose and mouth, and Alex was
hysterical and having a hard time breathing. My husband had to yell at Ethan to
get him to get up off of his brother, and Ethan spent the rest of the day in
his room. We were completely horrified and knew at this point that we had to do
something. We had been considering the option of medication for a while but had
gone back and forth. This incident was the clincher. I was not about to spend
my days protecting one of my children from the other.
Now, I feel the need to pause and insert something, here.
Those of you who know my boys and, primarily, know Ethan, may be sitting there
thinking, “But he’s so sweet! He could never behave that way!” Well, yes,
you’re right; he is sweet. And normally, he doesn’t behave this way. But in
individuals with Autism, they don’t know how to not give in to their impulses
the way neurotypical people do. Especially as children, they have a hard time
considering that there may be negative consequences as the result of a negative
action. In short, they don’t think; they just do.
Risperidone is designed and prescribed, in small doses, as I
said, to autistic children in an attempt to curb these impulsive behaviors.
Does it always work? No. It is entirely dependent on the individual in question.
Does the same antidepressant drug prescribed for one person suffering from clinical
depression work exactly the same as it would for another with the same condition? Absolutely not.
Sometimes it’s a matter of changing the dosage, sometimes the prescribing
psychiatrist may decide to add some sort of antidepressant (SSRI – selective
serotonin reuptake inhibitor), and sometimes they think the best course of
action would be to try something else entirely.
As I said, Ethan has been on Risperidone for a few weeks
now, and the truth is that yes, he still exhibits some aggressive behavior, but
it is significantly less than what we were seeing. His communication skills
have improved even more; he’s easier to talk to, reason with, and he
communicates with us better. When I ask him a question now, he actually answers
me almost all the time with “Yes” or “No,” rather than repeating my question
back to me or rephrasing my question as an answer (i.e., “Ethan, do you want a
PBJ for lunch?” becoming “You want a PBJ for wunch.”).
Speaking of lunch: interestingly enough, one of the drastic changes we’ve seen
has been Ethan’s eating habits. Mealtimes a few weeks ago were very stressful,
and it was almost always a battle to get a decent amount of food into him.
Let
me lay out for you what a daily menu for Ethan looked like just a few short
weeks ago:
- Breakfast: A “breakfast corn dog” (one of those Jimmy Dean
sausage links wrapped in a pancake) OR banana bread, OR French toast sticks (with no syrup),
but only the Farm Rich brand, and they had to be cinnamon. If they were a
different brand, Ethan knew, and he would not touch them.
- Lunch: The outside (crust) of a PBJ OR a “regular corn dog,”
followed by animal crackers OR fruit snacks OR Cheerios “with no milk.”
- Snack: Cheerios with no milk, OR animal crackers OR fruit
snacks OR graham crackers.
- Dinner: Usually one of the above items, either repeated out
of desperation or rotated (for example, if he had a breakfast corn dog for
breakfast that morning, we would usually relent and give him French toast
sticks for dinner, just so he would eat something). Dessert, again, would
usually be a rotated item from the above list.
He would only eat cupcakes “wif no frostin’,” and corn dogs had to be sliced with a serrated knife into
half-inch wide slices. If any of the breading was torn, he would insist on
Daddy or I eating that piece and would refuse to touch the rest of what was on
his plate. He would not eat broken graham crackers. If a Cheerio in his bowl
was broken, he would eat around it and sometimes go so far as to pick it off of
his spoon and lay it on the table before putting the spoon in his mouth.
So, I won’t lay out a what a typical menu might look like
today for you, but I will tell you that Ethan is actually trying, eating, and
asking for new foods now! We couldn’t be happier. Some things that he’s eating
now that he wouldn’t touch or even taste before include bananas, macaroni and
cheese, grilled cheese sandwiches, turkey sandwiches, chicken nuggets, rice,
tortillas/quesadillas, Jell-O, fruit cups (his favorite is peaches), and he
actually asked his daddy for a taco one night!
Some other things that he’s okay with now are eating a piece
of his corn dog even if the breading is torn, keeping his shirt on if it gets
wet (like, if a drop or two of juice spills on his front, he used to hiss, claw
at himself, rip his shirt off, and run away), and water getting in his face
when we wash his hair. These things were intolerable to him a few weeks ago.
He’s also a lot more easygoing if plans change now. Anyone
with an autistic child knows how upset and distressed they can get when plans
or routines change for them. Ethan is mildly upset at first if we change plans now,
but is easily distracted and, most importantly, listens and understands when we
explain to him why plans have changed. He’s usually fine with it.
And now, the biggest change of all: he’s talking to and
playing with other kids! He doesn’t wait for them to approach him on the
playground anymore; he walks right up to them and says “My name is Ethan and
I’m four years old!” We were at the playground the other day and he walked
right up to a group of girls (I know, I know, girls already?!) and was grinning
at them shyly. One very sweet girl who looked to be a bit older than Ethan
asked him if he wanted to play with them. To my shock and surprise, he confidently answered “Yes, I do!” He
climbed into the boat with them and they proceeded to play “Pirates” for all of
about 5 minutes, which I’m sure is as long as any of their attention spans
could stretch. But my heart melted! This was the little boy who, just last
December, refused to go down the slide at the playground because there were two
little girls using it. This is the little boy who screamed and ran away to hide
behind his father or me whenever other children tried to talk to him or
interact with him. He’s got friends at school, and he doesn’t make “angry cat
noises” (as I used to call them) at other adults or say that he doesn’t like
someone when they try to talk to him. He makes eye contact with people other
than family members (however brief it may be), shakes hands and says “Hi, my
name is Ethan. Nice to meet you!” He’s even more affectionate with us than he used to
be. When I asked him yesterday if I could cut his hair, instead of getting the
standard “angry cat noise” and the “I don’t wanna wet Mommy cut my hair!” that
I expected, what I got was, “Well, okay.”
After giving Ethan a bath to wash all
the hair off, I was knelt down on the bathroom floor drying him off. I saw out
of the corner of my eye that he was smiling at me, and when I looked up at him
he grabbed the sides of my face and kissed me on the lips. As if that weren’t shocking
enough, he then threw his arms around me, hugged me, and said, “Oh, I wub you,
Mommy, so, so bery much!”
That is a memory that I will cherish until my dying day.
Now, there is one con that we’ve spotted with the
Risperidone so far. Are you ready? For about a week there, Ethan would wake up
once, sometimes twice, a night. But he went right back to sleep after some
water and a little snuggle from Mommy or Daddy.
“That’s it?” you say? Yep, that’s it.
Has Risperidone made our lives perfect? Absolutely not. Is
life with an autistic child ever perfect? Absolutely not. But it has made our
family life and, more importantly, Ethan’s life, so much more enjoyable.
So, to you naysayers out there who are against
medicating children when it’s necessary and warranted, especially when the
child in question is not your child, , I have this to say to you: the results speak for themselves.
Our family, our child, our choice. And finally, to put it bluntly:
We’re happier, and Ethan’s happier. Mind your own damn
business.