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. 

The calm after the storm

Well.  I'm SO glad that full moon week is over.  These days have been full of tantrums, screaming, breaking things, hair-pulling, biting, writing on walls, kicking, defiance, etc.  I haven't had time to think, much less do anything else.  I never believed in any of the mumbo-jumbo about how the moon cycle affects this and that until recently.  Now I can guess the moon cycles just by the boy's mood.  But just as quickly as it comes, it goes.  And when it goes, it's so great. 

Today we had a few great minutes.  When I say great, I mean the cute, adorable, must-squeeze-your-cheeks-right-this-very-second kind of great.  A few minutes after getting home from school, he crawled up on my lap, hugged me tight, and said, "If Benjamin Cofer's happy, then Mommy's happy."  I couldn't help but to just grin and agree.  I squeezed him super tight, and held my boy.  Moments like these just don't happen often, and I wanted it to last.  He sat up and looked me in the eye (!) and said "Mommy, you want rub my shoulders?"  I never know if statements like that mean that he wants me to rub his, or if he's asking if he can rub mine.  Pronouns are troublesome.  Anyway, I said yes, and he put my hands on his shoulders.  I waited for him to do it, because we all know how necessary permission is in these situations.  I lightly massaged his shoulders, and he leaned back in against my chest and sighed.  He then said the greatest words I've heard in a week: 

"Ohh, yeah.  That's the good stuff."  I was at a loss for words at this completely unexpected display of affection.  I just had to bury my face in his hair and enjoy it.   This was the best five minutes of my entire week. 

..until he got up and kicked his sister and threw a toy at the dog.  *sigh*

From the top

I've had so many things to share that seem to lengthy for the Spectrum Circle Facebook page to have as a wall post. And of course, now that I'm beginning my journey into bloggerland, I suppose I should start from the beginning? I have a 2 year old NT (neurotypical) daughter and a 6 year old son with PDD-NOS, OCD, ADHD and severe mood disorder.  This one is long, but here's the story of our family's beginning.

When I was 24 I became pregnant with twins. It was rough from the very beginning, with all the usual pregnancy thing. I was having fetal ultrasound checks every two weeks, then when I was five months along, we went to the scheduled Monday appointment, and we found out that twin A (Avery Lane) had died. It was later confirmed that this was a result of atypical Twin-to-twin transfusion syndrome, and Avery became my "big baby" very suddenly and without warning, and his little heart could not keep up with all the extra blood and nutrients he was receiving. Generally it goes the other way, where the 'big baby' will be the survivor.

When I found this out, I immediately went into labor. Just. Like. That. Right there in the doctor's office. The office happened to be located in a hospital, but the pregnancy wasn't far enough along for that. They had to break out the big guns. We were sent to St. Vincent's Women's Center, where I was put on Magnesium and terbutaline to stop these hard contractions. The docs were able to get them curbed. I was still able to feel them, but they weren't as intense, and I wasn't dilating anymore (thank GOD!). I was told that I would remain in the hospital until delivery, and that I had to remain pregnant with twins until twin B (Benjamin William) was delivered. I remember asking the doc, "are you seriously going to make me lay here in this bed for four more months?" He looked at me and said that it would be closer to 4 or 5 days. WHAT? It was too soon. I may have been preparing to be a first time mom, but I knew that 5 months gestation was WAY too early.

The next day, they wheeled me down to the NICU and showed me all the preemie babies. Their motive was to show me that they had the best facility to accomodate all sorts of needs. What actually happened was that I just got really sad, seeing all these tiny tiny babies and their parents, not allowed to touch them. When I got back to my room, they told me that they would do all they could for my baby when it was time, but not to expect to be able to hold him right away if he survives the birth. A pediatric neurologist tried to explain to me that babies born this soon tend to scream when touched, that the slightest breeze or touch to his skin would be excruciating and that he wouldn't likey ever speak or walk.

Well, the four days passed, and I was given a surprise. Instead of heading to the OR to deliver, I was given a terbutaline pump in my leg and sent home. WOW.

So I went home on bed rest, and kept up with the ultrasounds, only now they were EVERY Monday. This continued for about two months, still having about 6 contractions an hour. I got really good at changing the needle, med container and tubing for the terbutaline pump in my leg. Then when I was seven months pregnant, that familiar pain came back. Intense and regular, every 4 minutes. I called the company that watched the monitor that was strapped to my belly 24/7, and they agreed that it was time to go. I called the doctor at around 3am, and we were off. I layed on the bed, changed into the gown, and they determined that Benjamin was in distress and we went straight into the OR. No time to wait for a contraction to stop so I could get my spinal block, oh no.

They had him out within seconds, but wouldn't let me see him. Instead they swaddled Avery and gave him to me. They wouldn't let us get pictures of Benjamin right away, and I didn't hear him cry. The first words when the doctor pulls the baby out are normally "it's a boy! Look Mom and Dad!" Not here. I'll never forget what I heard. "Well THAT'S not a good way to be born." Ohmygosh, what?

Turns out the cord was around his neck, and he had to be revived twice. It was three days before I could hold him for the first time, and I had to pump instead of nursing him. He spend a day under the O2 hood, and had a feeding tube for what seemed like FOREVER. Thankfully though, he was 3 lb 6 oz, which gave him a fighting chance.

To wrap this up, I'll just say that after our stay in the hospital, we brought him home at exactly 4 pounds. Our little miracle, who did NOT scream when touched. Now he just yells a lot for other reasons ;) He looked like a little old man. <3

BW was a week old in this shot.

Please feel free to leave comments, questions and feedback.  I only ask that you be respectful in doing so.  Comments with harsh language will be deleted, otherwise we would LOVE to hear from you!