Wednesday brags

[akafred]

Let's hear them! It's been too quiet around here lately.

[akafred]

Back story: DD (8) has ADHD and anxiety. Her anxiety appears like oppositional defiance when it rears its head most of the time. She takes fluoxetine and guanfacine because stimulants make the ADHD worse. Building up to the end of summer, her anxiety was flaring up, not surprisingly. Then she ran out of guanfacine and the pharmacy refused to fill it even though she had refills left, saying patients don't take those 2 meds at the same time. The doctor's office didn't refill it because she had refills and did not understand why they required a new prescription. She went without for about a week, and in that time DD's behavior went to hell in a hand basket. Fluoxetine seems to make her more impulsive anyway, and the anxiety makes her defiant and it was just ugly.

The brag: Immediately upon getting the refill, DD's behavior did a 180. Which is great in and of itself (though likely temporary; we have yet to find something that works this well long term), but she seems to have learned a new skill. Instead of arguing, she asks questions. Example: She sometimes puts her weight on the open drawer in the bathroom, and I tell her to stop because it will break. So she argues that she didn't. I explain that she did, I'm not upset and she isn't in trouble, but she needs to stop because I don't want the drawer to break. She argues, and now I'm frustrated because I just want her to listen to me and hear that she is going to break the drawer if she doesn't stop. Well now instead of arguing that second or third (or more) time and driving me nuts, she says, "I'm not...am I?" Which is sooooo much better for my nerves but also gives me new perspective on where we are both coming from. She gets hung up because to her she really isn't doing whatever and apparently has to fight to the death defending her honor, where I just want her to hear the message, but get caught up in what seems to be button pushing. Asking it as a question does not push my buttons and it just feels so much less stressful. Hope it lasts!

[waverly]

Not really a brag but I am on the wait list for PT at a closer facility. They are sending a resource list for other places and have the eval scheduled at a farther location. So progress although ultimately I would prefer him to be treated a little closer. The wait list is 6 patients so maybe not too bad. Same therapists at both locations.

IEP meeting is tomorrow and the plan is to trial an FM system. So I guess my brag is more like forward progress little by little.

I'm a little worried since orthopedic mentioned neurology, but it's not an immediate concern and he didn't push for it going with PT instead, but that is on my radar for after PT. Nuero is probably never a word people want to hear...

[chickypoo]

O's ST came in and he crawled over to her, pulled at her so she would pick him up, and then gave her big hugs.
It was the first time he's even acknowledged a therapist when they come in, usually he just ignores them lol

[freezorburn]

chickypoo, that is so awesome!

[freezorburn]

DS has a new BT as of this week. We got to meet her for the first time a couple of weeks ago, but today was their first one-on-one. I listened in a bit while catching up on chores. Sounded like they were getting along really well! It was really cool to hear them work on emotional expression/interpretation.

[miranda]

Sept 6, 2017 19:07:56 GMT -5 akafred said:

Back story: DD (8) has ADHD and anxiety. Her anxiety appears like oppositional defiance when it rears its head most of the time. She takes fluoxetine and guanfacine because stimulants make the ADHD worse. Building up to the end of summer, her anxiety was flaring up, not surprisingly. Then she ran out of guanfacine and the pharmacy refused to fill it even though she had refills left, saying patients don't take those 2 meds at the same time. The doctor's office didn't refill it because she had refills and did not understand why they required a new prescription. She went without for about a week, and in that time DD's behavior went to hell in a hand basket. Fluoxetine seems to make her more impulsive anyway, and the anxiety makes her defiant and it was just ugly.

The brag: Immediately upon getting the refill, DD's behavior did a 180. Which is great in and of itself (though likely temporary; we have yet to find something that works this well long term), but she seems to have learned a new skill. Instead of arguing, she asks questions. Example: She sometimes puts her weight on the open drawer in the bathroom, and I tell her to stop because it will break. So she argues that she didn't. I explain that she did, I'm not upset and she isn't in trouble, but she needs to stop because I don't want the drawer to break. She argues, and now I'm frustrated because I just want her to listen to me and hear that she is going to break the drawer if she doesn't stop. Well now instead of arguing that second or third (or more) time and driving me nuts, she says, "I'm not...am I?" Which is sooooo much better for my nerves but also gives me new perspective on where we are both coming from. She gets hung up because to her she really isn't doing whatever and apparently has to fight to the death defending her honor, where I just want her to hear the message, but get caught up in what seems to be button pushing. Asking it as a question does not push my buttons and it just feels so much less stressful. Hope it lasts!

Okay two things- first, my son is on both guanfacine and fluoxetine; what rubbish about them not going together. GD pharmacies, I have found myself driving all over the metro area at times trying to fix their messes. Things have improved exponentially now that our clinic has finally gone to electronic scrips for controlled substances.

Second- your daughter's behaviors reminded me of my single-most favorite piece of advice I've ever received. Like her, he flies off the handle when I tell him not to do something that he's doing. Back in kindergarten it was taking his shoes off. I and his teachers were constantly barking at him to put his shoes back on (he fidgeted and toe-walked and they were always coming off.) Finally his teacher realized she needed to change her tact and instead of saying "you're taking your shoes off, stop it!" she'd say "why are you barefoot, silly?" or somesuch- taking the blame away from what was, to him, unintentional behavior. I remind myself of this all the time with DS and it makes our lives so much better when I can try to see things from his perspective. I'm learning- slowly- to chill.

[miranda]

Not too much going on here- school started but it has been unremarkable, which I guess is a win. DS is more subdued because his two BFFs aren't in his class. I think this is a good thing because he has put all his eggs in one basket, friends-wise, and I can see they are maturing more rapidly than him and seem like they need a break. I hope he can branch out and find other kids to hang out with. When I ask him who he eats with at lunch he just says "the boys table" and when I ask what he does at recess he says usually the gaga pit, which is good because he usually just hung out with his two friends, talking.

We took him to Disneyland and CA Adventure over the course of two days a couple weeks ago and it went better than I expected. I was afraid he'd check out early due to fatigue (he's extremely low-tone, and fairly apathetic). Fortunately we got great weather, and we utilized CA Adventure's new MaxPass so basically walked on to every ride. MaxPass was broken at Disneyland which sucked but the crowds were lowish so using paper fast pass was fine. Our trick to keep him happy was to be there when it opened and then we left around 2 for a long break at the hotel pool/ipad. The first day we waited until dark and went back just to do Carsland again with all the neon lit up- it was so cool, and DS loved it. The second night DH was Disney-ed out so just DS and I went back. We went back around 5pm and I realized I had forgot to give him his night stimulant. It ended up being a happy accident. When he is on his stimulant his is agreeable, but flat and apathetic. He was in a very fun and goofy mood that night and wanted to do ALL the rides again. He and I ended up spending another 4 hours at the park that night and he didn't complain once. I used the disability pass for the first time that night and it was slick- we got to just walk on to any ride we wanted. I sure didn't feel bad using it because he was so squirrely that anything over a 10 minute wait would have had him bouncing off walls. Because he wasn't on his stimulant he was also famished so I think I spent $40 trying to fill the black hole of his stomach.

[mamaturtle]

miranda , I think I am going to try to remember that with DS. Lately, he just has not been listening to me.

My brag is DS got student of the month for August.

My sister is a hairstylist and cut DS's hair. He handled the sounds and smells of the haircut pretty well because he was allowed to play with my phone. It has been awhile since I have taken him in to a hair salon. The last time was when he was 2 or 3 and the hairdresser accidentally cut his finger when DS moved with the scissors. I rushed DS to the er to get stitches.

My other brag was over the weekend DS and I went out of town to visit my family. DS got along well with his baby cousin and my brother. He was saying he wanted cousin to come live with us so they can be brothers and he can take care of cousin and cousin can go to daycare and be in the "monkey room" with the other babies. (DS did take care of cousin for the most part while my mom and I cooked and washed dishes.)

DS said my brother was his brother and DS wanted to camp outside with my brother. My brother helped take care of DS and had DS help him clean his room because my sister and her family was moving in with my parents due to tough times. DS and my brother made a boys club and DS denied me membership.

On the day we were leaving, DS didn't want to leave and wanted to stay because he had so much fun. He cried when he was in the car when we were leaving. I almost cried because it made me want to have another baby with DH so DS would not feel so lonely with a cat.

[mightymaude]

DD (almost 7) has anxiety, SLI, and is reluctant to interact with peers or show knowledge in school.

In may, two girls moved next door, and DD intermittently played with them over the summer when she felt brave. It helps that the girls are really friendly and don't get insulted when DD doesn't always acknowledge them talking to her. Anyway, this must have seriously boosted her self confidence, because yesterday, day 8 of school, my kid got sent to sit by herself for the day because she wouldn't stop talking to her neighbors at her table.

[duff]

I'm such an infrequent poster, so I feel a little silly coming in only to brag, but none of my friends have kids with special needs, so they don't get how big this is.

But I finally, after over two months of begging, pleading, and fighting, got a speech therapist lined up fro DD through EI! We have such a shortage of SLPs who can do feeding and my poor EI coordinator has contacted everyone she knows and eventually had to set up a contract with a different agency to get us going. This lady sounds awesome and I can't wait to get started with her!

I also got DD into a study on oxytocin and PWS with an endocrinologist who's considered one of the few PWS experts in the country. She's finding that oxytocin is really getting these babies to start eating, almost immediately, and in some cases it's helping with muscle tone. I was just calling to make a regular appointment to go meet her (she's so wonderful, she's answered all my emailed questions, read DD's sleep study report for me, and has consulted with our local endo to help get growth hormones started) and she asked us to participate in the study since DD will barely make the age requirement during their last open week! We go to Florida in about 10 days!

[sahara78]

DD started pre-k on Tuesday. She was really nervous and didn't want to go. Turns out she had a great time and was excited to go back on Thursday. The teacher said she did well, except she wouldn't stop chewing on her shoe during circle time. Not sure what that was about.

On a programming note, DD should start at a local ABA center within the next two weeks. Just waiting for final insurance approval.

[macchiatto]

It's not Wednesday but I haven't made it over here in a little while and am catching up.

Sometimes we worry about the dynamics with having one twin with ASD/social skills delay and then an NT twin who is gregarious and charismatic. It has its pros and cons. They do somewhat have their own friends at school, but at church and in the neighborhood, it often seems like the kids are Oliver's friends and Leo is sort of included by default but sometimes the kids will just invite Oliver. It SO warmed my heart at church today when the mom of their best friend at church (who usually seems like he's really more Oliver's friend) told me that her son actually said he would one day like to have a play date with just Leo, because he'd really like to talk to Leo about animals and never gets to do that when (Skylanders- and Pokemon-obsessed) Oliver is around. He genuinely wants to hang out with just Leo and isn't including him just to be nice! I can't even tell you how happy that made me.

[mightymaude]

DD's teacher got transferred to another school due to overstaffing, so day 12 of school was DD being moved to a new class. This was particularly traumatic b/c we specifically requested the teacher that she had b/c DD knew this teacher. The teacher was previously in K and was the person she went to when she couldn't calm down in her own classroom. My ILs put DD on the bus every day, and FIL had to carry her on to the bus while she kicked and screamed. DS dragged her off of the school bus when they got to school, which alerted school admins and they ended up getting her speech teacher to walk her to class. (DS didn't get in trouble) She chewed her shirt, refused to do anything, and cried most of the day.

Day 13, DD decided that she knew her teacher from last year b/c the teacher once came in her classroom. So she decided that everything would be fine and got on the bus like day 12 hadn't happened.

That might be the fastest adjustment she has ever had in her life.

[freezorburn]

First week of kindergarten went really well! DS loves his teachers. He has made a friend. And, he loves riding the bus to go to his after school program. The cherry on top is that the after school program is also willing to let DS's therapist work with him when he is there. I couldn't have asked for things to have gone any better last week.

I'm hoping this sets us up for me to go back to a full-time work schedule in about a year.

[mightymaude]

Week 4.

DD is not speaking in class yet, but did manage to buy lunch instead of bring in a packed lunch today. She is still waking up and crying that she doesn't want to go to school, but doesn't fight getting on the bus. She is starting to complain about sensory things she grew out of last school year. I can't decide if I need to request a meeting with her team or if I need to give it until October or not.

[auntie]

From my phone- warning.

10 days out from surgery my mother has the strength and joint range of motion of the average patient at 4-6 weeks. We have learned gabapentin is not her friend.

DS helped me take dad to radiology for a CT scan and MRI.