I heart that glorious time between 9-4 or 5.

BW has been so calm and polite and compliant lately... From the hours of 9-4 or 5. The new meds are making things so much easier for him to concentrate and sort things out. He is speaking in full sentences when reminded to, and is learning to be more patient. Not completely patient, but more patient... Between the hours of 9-4 or 5. Besides those hours, it is total chaos here. Resume the screaming, obsessing, violence and nuclear meltdowns over trivial things. This combo is brilliant, but there is a definite line that gets crossed the very minute they wear off. (no, when the meds are in effect, he doesn't seemed "doped up," and it is for his benefit, not just our convenience.). Just a peek into how our days have gone lately. People at church the last couple of weeks have been encouraging in saying they have noticed big changes the past couple of weeks. (some of them know about "the big break" and others don't.) I've been in love with the new "coctail" he's on, but only between the hours of 9-4 or 5.

As for me? My nerves are still a wreck, and any prayers would be greatly appreciated for our whole spectrum family. Because really, when there's someone in the house on the Spectrum, everyone is affected. Keep BW, sister, Mom amd Dad in your thoughts please, as doors continue to open for us.

The Dentist, Sedation and Mommy not being present.

BW has a sedation dentist appointment tomorrow morning.  No major work done, but he has to be sedated in order for the dentist to come out of this with his fingers intact, and for BW's nerves to not be fried.  They are doing a cleaning, and considering sealants for the back teeth since he is a grinder.  I told them if there are any cavities that need work, to just do all they safely can while we are in there. I'm somewhat ashamed to admit that this is his first dental exam,  but at least I'm taking him now, right? I was told at the consultation that his teeth seem healthy and they don't anticipate any issues.  The boy jad better have healthy teeth, he didn't even jave any until he was about 10 months old!  

The bad part? Mommy can't be there for the appointment. He will be in the capable hands of his Daddy while I drive my grandpa to have a medical procedure out of town. 

NYE

Given the incredible stress that BW had over the past couple of weeks due to a bad med change and breaks in routine, we opted to stay home and have two friends visit for NYE. This was a good good decision, and the only thing that got broken today was a plastic cup and set of RCA jacks that came with the new DVD player that got set up a week ago.. one of the pins from the plug got broken off inside the tv when BW yanked it out. But all in all, he had a good day. He even said Happy New Year to every single dag-blasted person we saw in Walmart this morning, and hugged most of them (while I begged him not to and rolled my eyes as I coaxed him to the next aisle). Normally he just screams in Walmart. I'd call this holiday a success.

.. And by "this morning" I suppose I mean yesterday morning. Since I'm still awake at 5:30am, you could see how I'd make that mistake :/

Today autism and I are not friends.

Last week we saw doc and we expressed all our concerns about weight gain and increased intensity and duration of 'rage and destruction for no discernable reason' episodes. He decided that as much as we liked the previous med, it appears to be time for a change. So we discussed our options, and carefully (oh so carefully!) weighed the options, benefits, and risks. We were sent home with a titration pack, and did a we were instructed. All week we saw minor improvements in some areas, but he's still got a long way to go before we can say we're comfortable with saying we've got a sufficient replacement. I miss my boy, and today I have to just sit here and say: Sometimes I hate autism so much. I miss my boy, and I want him back. This kid that's here screaming and biting, fighting and spitting, throwing things and hurting his sister- thats not my boy. My boy likes to tease and laugh, play and read. And cuddle. I miss cuddle time when no one is upset or trying to hurt someone else, when we don't have to raise our voice or make threats to get things done. I miss it, and today I hate autism and I'm not ashamed to just put it out there. We even got a note from the teacher today that says she isn't seeing improvements with this med and she also used the phrase 'I want the old back!'

Why can't autism take a vacation and just give me a break sometimes??

Dear Autism, today we are not friends.

Holidays- Learn As You Go.

The day had its ups and downs. We went to a Christmas party and made it through lunch, then had a few glitches when it was time for the kids to exchange their gifts, but was still "ok." During all the down-time it got difficult, though. A lot of wandering and exploring since it was a house that we generally only see once a year. The house is constantly being renovated, and there are always new walls or floors or other major changes every year, and this confuses BW. He gets agitated and literally wants to touch every surface of the house, and every item in it. There are a lot of people at this party every year (45-50), and with larger groups, there's more people who don't understand, and more anxiety on BW's part. We're getting better at recognizing the signs though, and this time we got our coats on and said our goodbyes, and got all the way to the stairs before the howling ensued and RC had to utilize the fireman's carry. I had our medical equivalent of a fire extinguisher in my purse, but didn't use it. Like I said, we're getting better every time. I won't allow myself to get too confident with that though, because when I do, I get BLINDSIDED by a totally new kind of chaos...

Christmas Program Success

BW's school had a Christmas program this evening, and I have to say- he did remarkably! The Kindergarten students sang several songs and his teacher and aide were both on the side of the stage within arm's reach- just in case. He did sit down once for about half a song, but for the most part he was VERY good. I don't mind that he didn't sing much, I was just thrilled that we made it through a crowded event without a meltdown until it was time to leave! Of course he was eventually carried out kicking amd screaming across Daddy's shoulders, but HE ENDURED until his songs were over and they were dismissed from stage! He did make up for it later and resume the horrendous screeching and fighting that is so familiar to us.

Unrelated note, I didn't get any good pics or video because of a very rude man standing front and center taking a video of THE ENTIRE PROGRAM with his phone. One mom whispered to him to ask him to kneel down, but he acted like she didnt exist. 5 minutes later during BW's favorite song of the night, I walked the lane and politely informed the man that people behind the fourth row weren't even able to see the stage and asked him to kneel. Of course he ignored me too, but I kept talking. I told him that we wanted to see our kids, and it would be very polite of he would please find a seat near the other parents who were taking pictures. He finally looked at me and showed me his phone in video mode. "But I'm just video recording," on a very thick accent.. I said that was nice to do, but he really needs to kneel like the other parents. I then walked back to my seat, and so did he. After the show the teacher, three aides and several parents thanked me for getting him down. I'm told that this man is incredibly rude in virtually every situation and it was a huge accomplishment. Personally I don't think I said anything rude or even impolite, but I do think he realized that I wasn't going to stop talking over his video recording until he moved ;)

Tonight I watched BW read a book to his younger sister.  My 6 year old, who couldn't speak a full sentence until he turned 5, kept his attention focused long enough to read a book- and to his sister, no less.  He generally has no tolerance for her presence, but for a couple of precious minutes, the boy read a whole book to his sister.  Proud mom? Heck yeah!

He has progressed so much in the past two years.  I have noticed recently though, that he still has the maturity of a 2-3 year old.  He throws tantrums countless times every day, and is getting so strong that I can barely hold him back when he tries to run, bolt, or throw himself down (or whatever other direction he decides).  His mood swings are so violent.  It's hard to take him anywhere because of the mood swings.

We went somewhere (public) today, and while standing just inside the door waiting for my husband to come in, a little girl and her family (whom we had never met) came in the door.  BW gave her a huge hug, and the girl complained the rest of the night about how 'weird' he is.  She kept asking me why he hugged her, why he was watching her play Angry Birds in the booth behind us, why he couldn't sit still and be quiet, why this and why that. 

I'm so tired of answering why when other kids think he's weird.  I'm just glad he doesn't understand yet that some people don't care for him because he's different.  He loves everyone he meets, and if he recognizes you, he calls you his friend and means it very seriously.  It's going to Break. My. Heart. the first time he realizes what it means when a kid calls him weird, or when someone says they don't want him around.  It breaks my heart now, who am I kidding?  The boy has no friends, and it makes me sad.  We don't get invited to things, except for events that the whole church body is invited to, and the occasional holiday with the extended family.  No one really makes any special adjustments for him though.  Events will be held at people's houses that he only sees once a year rather than at grandma's, where he knows the place, and knows his boundaries.  So when we decide that it'll be easier to stay home than to be on constant red alert, they say "see? This is why we just do it here, they never show up anyway." (along with other things relating to not needing to make occomodations)

But we still try.

Because if we don't, no one else will and he'll never get the hang of it.  We put up with the scoffs, the comments,  the stares and stress  because leaving in the middle wouldn't do him any good.  As stressful as it was on all four of us, I'm glad we stayed.  They brought out a pinata for all the kids to take a turn.  BW got to the line somewhere near spot number 5, and by the time it was his turn, about 20 kids had taken their turn and he was somehow last in line, squirming and stimming and moaning and crying out, me holding him from pushing in, being told to be polite and wait our turn by yours truly.  But by golly, when it was his turn he knocked the bumper off that pinata-mobile and soon enough they all were rushing for candy and mini Play Doh tubs.  BW was so proud.  None of the kids really cared who gave the final whack once the goodies started spilling out, but he was so proud.  He had a big open mouthed grin, raised eyebrows, and wide eyes for quite some time during the ride home, and talked about the one thing he will choose to remember about the outing:  "I break open candy for the kids!" 

Thank you Lord, for his innocence and ability to take the one good thing that happened tonight as his memory of the whole evening.  Thank you for making him so smart and amazing, even when others don't see it.  Please help me to stop crying about all the mean things of this world that he doesn't see or seem to notice.  Thank you for giving him that innocence that protects him from these things.