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.
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