Homecoming week

Over the past few weeks some of my facebook friends have posted pictures of their teens heading off to homecoming. It made me kind of wishful for my own kids to have these experience. Last week turned out to be homecoming for Peter's new school. I was nostalgically excited. Yet, I did not push anything and just let him go about his days discovering the opportunities himself. His hallway attendant reminded him everyday that on Friday she'd be taking him to the pep rally. I figured that would be the extend of his homecoming experience. That would have been enough.

The whole week just about passed before he declared he did want to attend the homecoming football game. John picked him up from school on Friday afternoon (as I had to be home for a Verizon appointment). The attendant relayed that Peter had purchased a ticket to the dance, but verbalized that he thought it was a game ticket. So he had dove off into the deep end. 

Would anyone at the dance even know him? What would he wear? What if he got lost (the attendant wasn't going)? Encountered a bully? Have you seen the Netflix show Atypical? It's kind of crass, and has some inappropriate and disappointingly unrealistic subplots... but we've watched both seasons for the autism component. The show is about a teenager named Sam, who is highly functional, gets good grades, has a job, and can go about his day independently. Peter is not Sam. However, there are elements of the show and family dynamic (not the cheating mom part, obviously) that I can relate to.  There's was also a story online last week from another autism mom whose son was sexually harassed at his homecoming dance (which was caught on the school surveillance camera). I would say that I had these various scenarios in my mind of good or bad outcomes.

He decided that he did indeed wanted to go. With less than 24 hours notice drove all over town procuring the appropriate garments. He needed dress shoes and slacks. He's very skinny with a tall inseam. We had to go to several different stores to find something that would fit. Rush home, rush the new pants and old dress shirt though wash, dryer, and iron. Coax him to allow dad to brush his mane. (Since starting school he has refused to have his hair cut... thank you long haired teen boys everywhere). I made sure to take some pictures before it got too dark out... because I feared this might be the only dance he would ever attend...

We dropped him off at the gym and he waved with a grin and walked into the lions den. He had his sister's cell phone (the flip phone we purchased for whenever one of the kids would be out without us). His Angel Sense GPS device was tacked to the inside of his sport coat pocket. It wasn't functioning very well and I'm trying to arrange to send it back, but we're still using it for now. While it has a listen in feature, I did not activate it. The $40 a month service charge only included 60 minutes of listen in time.  Perhaps I should have. 

About two hours later we got a call from an unknown number, which turned out to be Peter having borrowed the cell phone of an adult. He was crying and saying something about "friends no longer being friends." John took off to go get him. When I activated the listen in feature of the Angel Sense device. I heard Peter crying and venting while John was driving him home..

Peter doesn't tell stories in chronological order. He shares the strongest emotions first. Some girl told him "I don't even know you, you don't belong here!" When he got home practically crawled into my lap. John drew up an Epsom salt bath. The flip phone was gone. Peter said he had broke it. He had a picture card from the dance. At some point he was photographed with four other kids, who seemed to be two couples. Peter said one of the kids is in his guitar class... and that kid "watched porn," which Peter repeatedly expressed disapproval of several times through the rest of the weekend. (a couple of times while we were eating lunch at Costco surrounded by his younger siblings and many other people.) So it sounds like he spent the first hour or so with this "porn addicted" friend, then separated from him and linked up with his "locker-helper" girl who had told him he was welcomed to hang out with her and her friends. This girl offered to help him with his locker one day. His assigned locker isn't working. So it was one of her friends who might not have been having a good time. Peter admits he said to this girl that she reminded him of his sister, Charlotte. Then she let loose her verbal assault. He said after that he went away and cried. At some point though he approached the girl and requested she apologize to him. I can't be sure of the exact wording, but "some boys" told Peter "whoh, whoh, she's got problems." At some point after the girl said her piece Peter admits he snapped the flip phone into two pieces. Then he approached the police officer at the dance for help calling his parents. 

We're all pretty tired after this weekend! Charlotte had a busy day outside of the house on Monday, so we spent a lot of time on Sunday trying to fix her up with a phone. Peter has been OBSESSED with wanting to get a cell phone... but not just any old flip phone, he wanted a "real phone." So we had to find a way to go negotiate the purchase of a new phone without him... distract, distract, distract was my whole day. She's working outside the house 5 times a week walking dogs through the neighborhood. I want her to have some sort of GPS tracking capacity and thus an iPhone would be the best solution. Keeping anything a secret from him is difficult, and I wasn't going to be able to do this while he's in school without sacrificing a whole day of homeschool (and going to a store with my other 7 kids in tow). So it had to be done on Sunday, while Peter was home. John is better at this stuff anyhow. So he took Felicity to "buy food for her rabbit"... and bought himself a new cellphone and Charlotte now has his old one. 

We're not sure where the pieces of the flip phone went. He didn't bring them home. 

We need a GPS/ cell phone solution for Peter... but something that won't be likely to become his destress tool. He has the habit of taking his frustration out on electronics... and just about anything he lays his eyes on. More then a couple times I've seen him look at the digital thermostat for our  new heat pump. Resting his head on the face of it or just staring at it squarely as in his line of site being at his eye level... he does that, he will fixate on an object for a while before he destroys it. If he breaks that thermostat I think I'd loose my mind. He resents that I spent so much money (trying to improve the air quality and winter heating system) instead of buying him whatever it is he thinks he must have. We wouldn't have given him his sisters cell phone, except we wanted to be sure he could call us if he wanted to leave early. But then he broke it instead of using it. It's like we're suppose to buy him only the most expensive item or it's not worth his respect. I'm beyond sick of it. However, there's no help out there for this sort of issue. He rules this house. 

Short days

Our new normal is a carefully choreographed dance of separation. John takes Peter to school at 7:50am and I pick him up at 2:55pm on a typical school day. Usually he's out of the house before any of his "annoying" siblings have graced his presence. If I can get everyone finished with all their lessons before pickup time, the late afternoon can be more easily focused on creating a quiet peaceful environment for the after-school landing.

Yesterday, however, was a testing day, all the kids doing the PSAT before an 2 hour early release. We had a lot less time to accomplish our homeschooling goals. Generally, if I can at least get the two younger boys finished with their work, that makes the biggest difference, as their presence is especially irritating to their big brother. Getting the girls (especially the 9yo) to stick to a schedule is like forcing a round peg into a square hole. They tend to disappear given any distraction and I have to restrain myself to yell for them to return... if possible. Sometimes it's not possible for me to search for them throughout the whole house and "quietly" demand they return to their studies at the table. Even yelling at/to the other children can cause Peter to come unglued.

Which brings me to contemplating June 13, the last day of school with a foreboding of dread. To keep the peace it will become imperative that we find him something to do during the day, outside of the house... or the rest of us find something to do outside of the house... and that it not cost us much money. Because... oh yeah... John is suppose to retire soon and instead of saving, we've been hemorrhaging money, time, and energy. We're on the glide path to land flat on our faces if anything other than divine intervention unfolds when he hangs up his uniform for good.

The list of broken stuff is still long. Yesterday was also the beginning of an open application season for a particular grant that kids with certain developmental disabilities can apply for. We are totally new to all of this. I only joined the special blessings group this past year (never having been to an actual meeting because it's like in Manassas, not nearby)… John has attending some informational presentations and I've been gleaning from the web groups. This particular grant is limited to first come, first serve, and needs based and I "think" it's state money. You have to specify exactly how you'd use it and for what, and be prepared to be audited of course. Folks apparently, stay up late so they can submit the application upon the stroke of midnight. The response was so overwhelming the site apparently crashed. By time we got around to putting in our application, everything was fixed. As we went through the form, I was struck with thoughts of "where shall I start, what's most likely to be approved and granted?" We put in a request for funding for the monthly service fee for the Angel Sense GPS tracking device I purchased last month. It was on sale, and I felt it might be very helpful as Peter leaves the house more often, perhaps even transitioning to leaving on his own.

Why not a cell phone... because as I read the crime reports daily, one of the most common crimes committed near our house is cellphone theft from pedestrian victims. If someone tried to assault my son, they'd have to have a special tool to remove and get away with the Angel Sense device. That was my rational. He still wants a cell phone though. That's one of the conversations I try and avoid with him, as he can get irritated pretty quickly. I told him the device wasn't just for him, as I've been sending it with Charlotte when she goes to walk dogs. That seemed to make it a little more acceptable to him. And for the moment he's not actually using it much. We hand him off to an attendant at school for now.

Next week we're having our IEP meeting and I'll learn more about what they think will be appropriate accommodations. We are hoping that perhaps we could get him a special needs bus ride or at least keep the attendant. However, they've continued to suggest that the attendant would only be a temporary accommodation. We'll see.

So my birthday is coming up... a date I'd rather ignore frankly. The school just scheduled the IEP meeting for that morning. So it's sooooo not going to be all about "me!" Every year John wants to know what I want. If I don't specify something, he usually buys me something I'd rather not have. All these years, he still doesn't really get me.... well he gets that we have different ideas and tastes. He gets that I usually don't like random gifts. If the "gift" is coming from my own pot of money, or as usually is the case, a unplanned expense I'm going to be very discriminating. I immediately think about the other things we need more than said unrequested item. Like, right now, we need to do some more yard drainage work for the house. The range hood over the stove and the dishwasher are both broke. All the storm doors are broken. The damage from Peter's last major outburst (broken glass shower door, and cabinet vanity doors, and towel rack) has caused the menfolk to abandon their bathroom, increasing the traffic in the "mom"/ diaper change bathroom. I can't even think about frivolous "wants." I can't force myself to fake joy in the little "gifts." I've always been this way. It's not gotten easier over the years. So this year I thought kind of hard... because it's really not about me at all. Birthdays are always about everyone else and what they want. They want to buy something and have me be grateful... so I told him I wanted the Joseph to my Bavarian Madonna, which is just about impossible as the 22" statue has been on backorder for years. So I suggested perhaps the set in the shorter stature... which is a compromise. If he actually buys them both in the smaller size I'm not sure what I'll do with my big statue. It's one of the few nice things I have that hasn't been wrecked. It's just a statue that's pleasant to look upon. As things have been destroyed my tendency to be attached to any "thing" has died a little more. I want to like my things. I want to live in a pretty home. However, nothing I can do right now would foster those desires, so why waste time, money, or energy on those?
That's where I'm at right now.

They were born that way...?

For the past three weeks the Challenging Behavior Workshop had been penned on our family calendar. When this event posted in one of my many special needs groups, I wasted no time signing up for it. We've been neck deep in challenging behaviors for over 2 years now. The advent of puberty has not been gentle on our household. So many things have been broken and much remains broken, because we're pretty much broke.

Last week my autistic son started at the local high school, so I could get him out of the house and allow the rest of the children some certainty of normalcy during their school day.
(Yes, I'm going to say autistic son, instead of son with autism...because I'm not sold on this person first language politically correct philosophy at this time...maybe more on that later).
At some point of time, which we have been unable to identify, someone made a disparaging comment about homeschoolers to Peter. It's impossible to determine if the comment was disparaging or if he internalized it impure of it's initial intent. Regardless, he came to believe that by homeschooling alone, he was a defuncted and uneducated person and he grew to hate me for holding him back. Because public schools are not required and usually will not accept ANY homeschool coursework for credit, I felt that switching to public school was counter to the goal of achieving a diploma. On paper, earning a "mom" diploma was going to be a lot easier. However, circumstances were pushing that goal into a deep well. There's still a rope attached to the goal, which could be retrieved if ever he desired to turn the wheel and pull it back out. It's not lost, but for now he's not going to do it. He was closed off to anything other than a public school education.

Since last spring I've been trying to coax him along to just keep trying till he could start school in the fall. He couldn't grasp that he couldn't just start school in the summer... or the immediate moment. His behavior continued to decline and for a few months we shifted our efforts towards looking for a residential treatment facility to send him, because we were certain that even a school wouldn't be able to handle his outburst. Surely, if he acted out at school, the way he was acting at home, he'd be expelled for sure. I wasn't only concerned about his desire and well being, I was and am concerned for keeping others around him safe too. I don't want anyone else to be hurt...not my kids and not anyone else's child either. However, we were unable to find a facility that would accept him into their program. So finally, at the beginning of August we contacted the Special Services Coordinator with the school district and let her know what he needed.

We were given a bit of the run around. "Call the registrar, register," was all we were told. The registrar said we needed an appointment. We waited 2 weeks for the said appointment which was for the day before the start of school. John took the day off from work, and I loaded up a suitcase full of work samples, textbooks, medical records, mortgage statements, birth certificates, ect and walked into the office ready to lay it all out on the table. They hadn't expected anything beyond a simple registration when we were finally standing in the main office. The special needs director for the school wasn't even available and the school councilor was nowhere to be found. We waited in an empty gymnasium for over 40 minutes till he could be tracked down. At this point it was clear they wouldn't be willing to tell us how the day would go if we registered him and dropped him off the next day. So I scribbled down a written request for a IEP, which officially gave them 65 (business day) to get things together. And we went home. A couple days later we went in for an intake appointment with a roundtable of special education professionals. There we learned it would take more time to get all the assessments completed and they couldn't offer anything special without the IEP. We went home with a slew of testing appointments.

Over the following weeks Peter grew antsy and agitated and there wasn't anything we could do to prevent him from lashing out at everyone. We where able to make two of the appointments before the day all hell broke loose. Sept. 11, will now have another event we'll never forget attached to the date. It will now be the day the world changed, and the day my son tried to break my face and did thousands of dollars worth of damage to our home and pulverized any last shred of peace we had in this home. That day we had to call the police to our home. His father had to rush home and spent the rest of the day at a crisis facility where the said the only thing they could offer him was trip to a state phych hospital, BUT they highly recommended against it because it would be very traumatizing for him. Off the record the social worker told John that only Children's National Hospital had the resources to take care of kids with autism, while all the other inpatient facilities (Fort Belvoir and Dominion) refused to accept him because they said his IQ was too low. John brought him home that night.
        (We were suppose to have an intake appointment on 9/11 for the Community Service Board (CSB) for determining his eligibility for state wavers and whatever resources...which was canceled after we had to call the cops)

The next day Peter stayed on the computer till his father came home, at which point something triggered him and he began to rage again. This time I was determined we were going to do whatever we had to get him to Children's... because calling the cops wasn't going to get him anywhere but a state hospital or jail. At least one more avenue needed to be explored before we resorted to cops again. John wrestled with him for about an hour, while I packed everything into his car he would need, and then I took the rest of the kids out of the house. Charlotte had her first tap class that night. When we returned John and Peter were still home, Peter back on his computer ignoring his father's suggestions that they go for a car ride. He was no longer raging but wasn't unsettled either. However, just the sounds of his younger siblings coming home was trigger enough. He became agitated again, but thankfully agreed to get in the car. John spent the rest of the evening with Peter in the E.R. at Children's. This led to almost a week in the locked psych ward. John had been scratched and suffered a broken tooth in the scuffle... and was devastated.

The following week was the first respite we've ever had. I needed time to emotionally recover from all sorts of feelings. My house... my home... is on it's head. So many things have been destroyed. We continually adapt, accommodate, and sacrifice... and it's never enough. And there seems to be no end in sight. While Peter was in the hospital, initially he wanted to know if we'd be picking him up, he was bored, but soon he was a model patient, clearly not the worse kid they were dealing with. It was pretty clear to me our home... our home filled with little kids, clutter, noise, and rules were all triggers for Peter. And I wasted no time contacting the school and letting them know what I wanted now. Two more testing appointments had to be cancelled because of the hospitalization. However, John and I took the opportunity to speak with the school social worker (for 2 hours we told her just about everything), and we had the lady from CSB out to our house for another 2 hours in the same day. We also attended family day at John's work (something we hadn't done in a while since the kiddie rides and activities irritate Peter). The little kids had a blast and their behaviors began to ease up. John took me to brunch at the officer's club... which was surreal... my life has been so restricted for so long. Yet, I couldn't help but feel like I was coming up from under the water just long enough to take a big breath before needing to submerge again.

Once I knew Peter was coming home I put in a call to the school and let them know we wanted to enroll him and get him started ASAP. I felt that I'd done all I could to inform them... and now they needed to do whatever they needed to meet the need. Our schools receive over 60% of the budget for our county. Even CSB only receives a tiny sliver of about 2% and said that the schools hold all the power, money, and resources. So to there credit once I decided I didn't want to wait to start school till we had an IEP in place the guidance councilor and the special needs coordinator moved fast and we met to put together a schedule. Most of his classes are the most restrictive, small special needs courses. I think they did a good job. Each morning this week we walked him to the main office to meet an attendant who escorted him to his classes. She professed that he's just the "sweetest" and had a great week. Peter really seemed happy. I'm praying this works!

However, he has told me a few things I'm concerned about and I'm still holding my breath. He's a very tall 17year old who has been placed with mostly 9th graders, 13/ 14yo and he's beginning to think he's their elder and might be taking on a similar big brother dynamic he asserts with his younger siblings.

He's still in the honeymoon phase. So many times we've tried something "new," and he's been excited and receptive for a period of time... till he's not. So we're still pressing forward looking for resources and trying to prepare for the future.

Last night John and I attended this Challenging Behavior workshop with the Pediatrician who was a self-professed behavioral expert. She just about lost me though, when right off the bat she declared we needed to accept that these kids were all "born this way." Just about the only thing I believe for certain is we are born with unchangeable and unique set of DNA. Genes can be inactive, they can be activated, mitochondria can become dysfunctional and damaged. Genetics are the loaded gun and environment can pull the trigger... but I don't believe that all these kids, 1 in 32 boys are born this way.

Either way, the workshop was a bit disappointing.  I didn't come away with much new nor inspiring. The ASC group hosting had generously provided subway club sandwiches (dairy, gluten, and soy unlimited) and for the fist time in over a week... after I'd painstakingly packed special lunches for Peter all week long; I was unable to prevent him from scarfing down 2 of them.

AND this morning, he tore the gate off the bolts as his father ushered him out the door for another special needs Transitioning to Adulthood Workshop. Yet, another gate is destroyed. I'm so used to this I've had a new one waiting in the closet, ready to go since July. I'm actually surprised it lasted this long. His record time for destroying a brand new gate is 1 week. But because his baby brother would still fall down the stairs head first if given the chance, we HAVE to have a gate. We NEED to move to a house which does not have the living rooms and kitchen on the second floor. He needs his own quiet living space. We need our own noisy safe space. We need more hours in the day. More money in the bank... but nobody is going to buy this house like this... so we're stuck.

Meanwhile, the blessed Benedict Crucifixes, miraculous medal, and holy water font arrived the other day. A tiny plastic St. Joseph is guarding our front door, and I'm saying whatever (short) novena that hits my inbox. Yet, I feel distant from our Parish community. Last week we attended mass at another Parish, because I just felt drawn to go there instead. The new Pastor at our home parish has been making changes, which aren't bad per say, but leave me feeling weird... too much protestant music or something, I don't know. I think his message is fine... it's just not working well for us. We struggle to get all the kids to sit still and be quiet in  mass. I thought perhaps a new place might help. The kids were still noisy, but the cry room and bathroom were much easier to access. The amount of Latin and purely catholic music is more soothing at this other parish. I don't know where we'll attend mass this week, but my heart feels pulled to make changes now.

Broken Things

The silverware drawer is broken again. I reminded the children that these cabinets are as old as the house and solid maple. We couldn’t afford new hardwood cabinets today. And while these have lasted over 50 years, the modern day counterparts wouldn’t likely last 10 years. In my attempt to clamp the runner thing for a more secure glue job, I cracked it even more. I really need to find a woodworker to fabricate a new peice.