Leo spent Monday and Tuesday of this week in a state of agitation, specifically targeting Mali. While in hindsight there were several possible triggers (post-birthday party sensory processing, Daylight saving time, high dose red food coloring from his cake, Keith Olberman's censuring) in the moment his aggression came out of nowhere -- we had just run several errands with a compliant and content boy when he started trying to attack his little sister in the middle of the grocery store.
He didn't get Mali, but she (understandably) freaked right into hysteria. And wanted to be picked up and comforted. Which I couldn't do, because I needed all my hands and strength to keep her brother from reaching her. And then my heart shattered into a million pieces, which made getting those two children all the way across the store to the exit challenging -- I'm not sure how it happened, but we did get back to the car, with rearranged seating and several minutes of me sitting in the driver's seat, paralyzed and gripping the steering wheel. I don't know how you handle shell shock, but for me it means driving at about 10 MPH -- which also happens to be a sign of drunk driving so I'm lucky we didn't get pulled over.
On Tuesday I tried an outing with them again, for Leo's actual birthday -- to his favorite cafe for a croissant. I was hopeful, as on the way there Mali asked him for some of his hoarded goldfish crackers and he handed them to her without my prompting, and without fuss.
We arrived. We parked. We couldn't get five steps away from the car without him flailing, lunging, and yelling at his little sister. Mission aborted.
I really started worrying -- we haven't seen that kind of violence from Leo since 2008, pre-Risperdal. What if Leo was sliding into an aggression cycle again? That would mean going back to no errands, no restaurants, no travel, no delicate visitors, and an even more circumscribed world for our social boy. A friend suggested investigating precocious puberty (our boys seem more susceptible), I started wondering about dental issues or meds dosage (his dosage has only changed by a miniscule amount in two years, though he's gained 15 - 20 lbs during that time), other folks suggested allergies and the Olberman-adjacent factors above.
But, because I have a hard time giving up and Leo deserves the benefit of the doubt, we tried going to the cafe again today. He was fine -- not one sign of aggression. He didn't sit next to Mali, but we don't allow such proximity anyhow; the measure of success was his not leaping across the table to get to her. And the rest of our afternoon was pleasant as well. I don't have an explanation for his seeming return to equlibrium, but I'm grateful.
Today we're going to attempt a family hike. There will be much discussion of the day's exact steps and schedule, and his iPad will come along for both visual schedule and entertainment purposes (did you know there's a Thomas the Tank Engine app? Leo is in heaven). The hike will be a schedule change, so we'll see if that's a bonafide trigger. And winter is always more difficult for Leo, as evidenced by seven years' worth of ABA data.
Not giving up on my boy. I enjoyed this video from Japan, about appreciating our kids' thinking instead of making assumptions:
P.S. One thing is certain -- Mali is going to need extra support, extra processing, extra listening, an extra-safe space to let her feelings work themselves out, because she is feeling traumatized -- again, understandable. She keeps asking me to sell Leo, and refused to sing him Happy Birthday. This is more than standard little sister antipathy. If you have advice or experience in the matter, please do share.
Wow, that video made me teary; I wasn't expecting that at all!ReplyDelete
I'm sorry Leo's been having a rough time recently. Glad to learn about the successful outing and hope the hike goes(went?) well, too.
Mali's response is both understandable and heartbreaking at the same time. Sending good thoughts your way and hoping that she feels safe again very, very soon.
i'm so sorry it's been a tough go.ReplyDelete
as part of a spotlight on siblings week on diary a while back, i posted the following - a summary of hundreds of responses from the now adult sibs of folks with special needs to the question, "What would siblings like parents and service providers to know."
the info comes from the Sibling Support Project (http://www.siblingsupport.org/about/copy_of_index_html)
they have all kinds of information on sib shops - from finding them to offering support to create them ..
we have found sibshops to be a wonderful tool for katie for all of the things you mention mali needing (and quite frankly, i think ALL our sibs need!)
i hope that helps!
I grew up with a mentally ill brother who was also ADHD and mean as a rattlesnake (and is currently in prison) and two abusive (to each other, not to their kids) alcoholics. I'm not sure the comparison is the same, but the feelings surely are close to how Mali is feeling. My safe haven? A closet. In my older brother's room - so he could protect me on the outside while I worked out life on the inside. Our folks knew nothing of this hidey hole, but when they went at each other, you would find three of the five of us in that closet (older sister always tried to help, youngest brother always cried for attention). It was my CHOICE to go in there, not a forced issue. I would think that if you can get Mali some emotional help (i.e counseling, etc.) and then give her her very own special private place that she can go to work through or get away from Leo, she would feel your protection by way of a "safe house". Let her decorate it and have coloring items in there, but also let her keep it her secret from Leo. I would also suggest a special "sign" that she gives you, when she's retreating to her safe haven - so you don't have to worry where she is. Then, when Leo has calmed down or you have help with him, go to her and give her the individual special attention that all kids need, but especially those who deal with such trauma so often. Unfortunately, I didn't have the counseling until much later in life - and because of what we endured as children, I lost the ability to process and have emotions for much of my youth and young adult years. (PS - I have a cousin who has interviewed in your vicinity - if he gets the job, I will hopefully visit him and get to meet you and your great family).ReplyDelete
my older brother was in need of a LOT of individual attention when we were growing up. i was always expected to understand. i was praised for being able to entertain myself and my mom still calls me her "responsible child". we had twins babysit for us when i was in 1st-3rd grade, but i remember them both spending almost all their time with my brother instead.ReplyDelete
to sum up: i think i know some of what mali is going through. i wish i could tell you exactly what would have made it easier for me.
individual attention. getting to do the thing i want (which i see now wasn't possible most of the time). and being acknowledged for how hard it was for me. it wasn't till about 4 years ago when my bro came on a family trip with no meds that my parents, for the first time i remember ever, said they knew it was hard for me and they appreciated the difficulty.
i still get defensive and angry when someone makes the "they can't help it" excuse. just cause bro doesn't always understand WHY what he's doing is upsetting isn't any reason not to tell him he's out of line. and if he's going to yell at me and tell me i'm dumb, i'm not going to dinner with the family.
and, i shouldn't have to be *extra* perfect to make up for him.
i have a lot of unresolved feelings about growing up in this position. i also know absolutely that my parents were doing the very best they knew how to do. there's not an easy answer. i'm not sure there's even a difficult answer. i'd say, just... give her some special attention and maybe let her get away with something (extra treats? occasional later bedtimes?) because she's "good" instead of letting it *seem* like lelo's always getting away with stuff for being "bad".
i hope some of that makes sense. i'm still trying to sort out my feelings about it myself.
I know you love being with all of your babies at one time, but one thing that has really been helping myGirl not be constantly told to "hold on" "wait" and "can you please do that by yourself, I'm helping your brother"..is going on playdates to other family homes...and lately it has been to families that do not have special needs kids.ReplyDelete
We don't have the aggression thing with myBoy, so if Mali does need a break, please, please let her come here for a few hours, dinner, whatever we can do, please let us help.
So sorry, sounds so stressful. I had a little issue this week that wasn't within the family and I wanted to make sure I was helping my daughter the way I should, a friend suggested calling the schools behavior specialist. It seemed helpful to chat with the specialist and she had a little chat with my daughter. If full blown therapy isn't needed maybe you can reach out to the specialists at her school and just let them know you are a little worried and they can check in with her.ReplyDelete
You are probably right on with all of the triggers you described for your son, fingers crossed it'll be over in a couple days.
Thomas the Tank Engine App? I really need an iPad. We're all Thomas all the time here!ReplyDelete
I know what you mean about dealing with one kid, tryign to comfort the other. I wish I could split myself in half sometimes to deal with it. I know the older one gets tired of the younger one constantly having to be the main attraction. I hate it sometimes. Ugh. But we manage and I know we'll be better for it.
Well this is something we deal with on a daily basis. I too have three children two NT girls (10 and 3) and my son with Autism 8. He used to enjoy pulling his older sister's hair for fun, but has recently discovered his little sister. It doesn't help that she is a drama queen, which feeds his reaction. I have recently started calling "girls only" meetings where we talk about the boys in our family and what we can all do to make life easier. One thing we came up with is the "pay the older sister" option. Sometimes, when I need to get somewhere and have to bring all three I "employ" my oldest to help with my youngest daughter. My oldest is loving it as she is getting rich and my youngest loves the extra sister attention. Interesting thing that came from this is that recently my youngest has decided to sleep in my older daughter's room. Not because she is scared, but because her older sister is "her best friend". But, because the oldest is a tween, all bets are off during the day.ReplyDelete
I do feel your pain with this..my youngest has also told me to take Will back to "Babies R us" and get my money back. My oldest has taken a mentor role with my son and has a great relationship. But, my youngest has been scared of him and struggles to understand him. His emerging ability to communicate with the iTouch has helped a little with this. She thinks it is cool, so it has added to his "cool" factor.
I have tried to find neutral ground, things they both love and try to let them enjoy that time together (ex. horse riding together). No more watching older brother doing fun OT and little one being forced to watch with jealousy as he would swing and bounce through the afternoon. Now my rule is if they girls are there, we need to let them join in. My son needs to know he is not the center of attention and the girls need to know that having a brother with Autism sometimes gives you some cool opportunities. I am sure they will all need counciling when they are older and I will be the world's worst mother. But, I figure when they turn 30 they will know I did the best with what I had. I tried to tell them all everyday how special and wonderful they were and how my heart soars when I would see them. Each of them, all of them beautiful to me.
Thanks everyone, so much. We had a much better day today, too, even though it was an off-schedule day. He made two half-hearted kick attempts when she walked too close to him.ReplyDelete
Beth, thanks. It is an amazing video, I hope people will explode it all over the Internet.
Jess, I appreciate the info. We have sibshops here, but the closest one is 40 minutes away. It would be great to get a more local one started.
Tammom, Mali could really use a space like that. I'll get on it. An IRL meetup would be excellent!
Erin, we do try to give her her own time & space and attention, but I appreciate the reminder to keep it up. The feelings-sorting might be complicated, as you said. Still exploring options.
Jen, India has a decent social life. The issues are all when she and her brother are together. If things get gnarly again, you know I'll be calling. Thanks.
Lisa, we're meeting with Leo's behaviorist tomorrow. I'll bring it up.
DG, maybe this will help in the meantime, if you haven't seen it already: http://www.thomasandfriends.com/usa/Thomas.mvc/Games/Home
Janine, thanks for sharing your story. Our kids are the same spread and genders -- just age-shifted by two years. Amazing.ReplyDelete
Unfortunately Mali & Iz bicker like wolverines all day long -- when Iz tries to help, Mali rejects her. I actually tried a bit of bribery with Iz this morning to help her sister with a tricky shirt and pants Mali wanted to wear ... it worked for about 80% of the time. Iz is sensitive and can't react, Mali is a master social observer and provoker. It's a volatile mix.
We need to find the cool factor & participation factor. I'll keep looking.
Yeah, cousin got the job! He'll be in Pleasonton - not sure how far that is away from you but I'll know more after next week when he gets moved. I'm SO excited for him - and that area is so perfect for him to be accepted in! He is going to LOVE it!ReplyDelete
Lots of love your way. It's interesting to me, because my daughter started becoming more aggressive around the age of 10, I have a friend who's son has just turned 10 and has started exhibiting more aggressive behaviors, and now Leo. I remember it being a difficult age even for myself; I suppose that's just a hundred times magnified when you're autistic.ReplyDelete
Still, a lot to celebrate recently, all the same. Am hoping those wonderful milestones of pizza and holiday can give you comfort during these rough patches.
Hugs all around.
P.S. Thanks for sharing the video. It made me teary-eyed, as well.
@tammom Pleasanton is a scant hour away, and an excellent town from all reports. Congrats to your cousin!ReplyDelete
@Devon, we are doing so much better. Still running interference between Leo and Mali, but preventatively rather than defensively. It's a relief seeing Leo feel more settled.
could be PANDAS and autism mixed together... like an unknown staph or strep triggering the aggression in the brain. we've seen it with our kiddo!ReplyDelete
Well Shan, you know we live in Texas - an hour away is NOTHING for us. We drive 45 miles just to go to church....and 70 miles to go to San Antonio! Texans thrive on driving! Hopefully, once he gets settled, I'll be able to come his direction (perhaps next summer) and have a IRL meet-up! I'd SO love to meet your kids (as they are SO like mine, even though the son-man doesn't have autism, he does fall in a "non-normal" category (don't we all?!)), and you and the Mister, of course. Your Iz is SO much like my older 2 daughters in brains and likes and Ms. Mali is the epitome of my youngest. I'm excited for my cousin and even more excited that I may have a chance to meet your family!ReplyDelete
I'm so sorry to hear about the bad day(s), but glad things are back on track more now, and that you have some good advice from others re: Mali. Also, thank you so much for posting that video; I've shared it around.ReplyDelete