What I Think of Leelo's Meds So Far
Leelo has been on the Adderrup two weeks as of yesterday.
I am still contemplating the benefits and effects, but things seemed to be weighted more towards the positive end of the scale. Especially since Leelo seems to be settling into the med and some of the more upsetting earlier reactions (emotional storms, the return of night shits) seem to be tapering off.
His appetite has decreased moderately. He still likes to eat, and still eats healthy amounts, but he is no longer doing the all-day compulsive eating like before. He seems to view stopping as a function of being full.
Therapist Y particularly thinks Leelo has better listening and better patience both at home and in school. Although I worked in his classroom last week and thought that Leelo was much less verbal and compliant than he is either in home sessions or with me...but then again there were a lot of parents in the room so he might have been overstimulated.
His potty-training is different. Some days his ability to hold his bladder is astounding--two and three hour stints with dry pullups. Other days he just doesn't feel like keeping dry. And he is waking up almost every morning now with a big poo in his drawers. He hadn't had a night shit in months.
However, Last night Leelo went down to sleep without a problem; this morning woke up not too terribly early (6:00 AM) and was both clean and dry! He also had not torn apart his room looking for his Straw as he had been doing every morning since the Adderall trial began.
He does seem more aware of the fact that he can control his BMs. And he is not pleased. He will sit on the pot trying to produce, yelling and screaming, for up to thirty minutes. Supervisor M thinks that his new awareness of his processes hasn't yet allowed him to distinguish between (ick, go to next paragraph if squeamish) having a log in the chute, and the chute gate being ready to open.
On June 4 his sense of humor seemed to be missing. That day he did not laugh or giggle or react in his usual pleased way when I blew raspberries on his belly or made my usual big show of coming to tickle him. But this week he is more his giggly happy self.
Even so, he is reciprocating facial expressions and emotions, in a natural manner he hasn't used before. He is also seeking out and giving more spontaneous hugs and cuddles. He even let Mali kiss and hug him, and then he...hugged her back. And then a rainbow touched down in our yard and the birds started singing and a unicorn appeared and we all went for a ride. But really, he did hug her back.
He also sent his entire team into peals of delighted laughter by spontaneously making goofy faces at us from his trampoline during our team meeting. None of us could believe what we were seeing.
When he is calm, he is allowing us to cuddle with him for extended periods of time. Yesterday I got to sit on our front porch with him sitting on my lap rubbing his shoulders for a good fifteen minutes. I've never been able to do anything like that with him before.
Body Awareness: He no longer slams through other children as though they aren't there. He goes around them, thoughtfully and carefully (if not always successfully). Therapist L noted that he is now able to maneuver his tricycle through an obstacle course, whereas as recently as two months ago he only rode it straight forward or straight back with little awareness of objects around him (so why bother steering).
He is also using more naturalistic, thoughtful language rather than standard prop-language such as, "I want xxx." Here are examples of him actually thinking about what he's saying:
Me: "What are you singing, Leelo?" (Not expecting an answer.)
Leelo: "I'm singing The Nutcracker, Mommy." (Mommy falls over in shock.)
Me: "Leelo, it's time to go to the potty"
Leelo: "No. It's time to watch a movie."
Seymour: "Go to bed, Leelo" (After the 20th time Leelo pops out of bed.)
Leelo: "I'm not tired!" (Seymour falls over in shock.)
He is singing so many more, and different, and lengthy, songs. He even taught Therapist L a song that she didn't know--he sang each line for her, and she sang it back for him. This would have been totally unimaginable two weeks ago.
He has been extremely emotional since he started the meds, and very aware of whether or not his parents and siblings are around. While he's not all that interested in Mali, he will scream, cry, and repeatedly ask for other non-present family members. He never in his life asked for Izzy before; now he wants her around all the time. Unfortunately, this means he sometimes invades at bed and night and bonks/scratches her as a side effect of his enthusiasm.
I wonder if some of the ADHD has cleared out and that we're now seeing more of the autism. The things that make me wonder are an increased need for consistency in his routine and environment, and his re-emerging irritation at people eating in front of him.
His need for stim objects has also increased, though his oral needs have lessened. He needs to have a "fidget"--usually a straw or tube--with him at all times. But whereas he used to mouth it the entire time, now he tends to hand-fidget with it. Though he does still put it in his mouth, he'll take it out immediately if asked. If we take it away then he goes into full-body stim mode, so I think that he wants a small object in his hand to help himself stay calm(er) and help keep his larger-scale repetitive body movements under control.
We (his team, including both therapists and parents) noticed he is using shorter phrases, and having some outright non-reactions to questions he would previously have answered straightaway. Supervisor M thinks we're now seeing his real processing speed: how long it takes him to think and then react as opposed to his previous pure reaction approach. She wants us to give him a 2 - 4 second window to respond before we step in.
He definitely is showing a greater preference towards routine and rigidity than before. He wants to use the school elevator, get french fries after school, and keep the car stereo playing kiddie CDs, every day ("I want to listen, Mommy!"). He is showing a classic dislike of furniture rearrangement, and will return chairs, etc. to their previous places at the first opportunity.
His reaction to sugar and cheese/yogurt products is still marked. He had a return of what Seymour calls the "neh-nehs," involuntary and constant verbalizations, within an hour of me letting him have a treat of Pirate Booty last week.
Overall I think we're doing the right thing. We are seeing lots of plusses and few minuses. Though I want to talk over his reactions with Dr. S before increasing his dosage, Adderrup has so far been a good thing for our boy.
Now I just need to find out how long Dr. S expects him to be on it.