Arizona Adventure

We moved. Across the country. In my last post I shared that I felt nothing, just a numbness. All I feel now is an overwhelming gratitude because, it turns out, there is enough grace for that. And so much more.

The house we ended up in is in a wonderful neighborhood, surrounded by farmland, (Yes, they farm in the desert! I had no idea!) and exactly two miles from the base of the White Tank Mountains and its regional park. It is gorgeous, especially for previous flat-land Hoosiers like us. treesThe one thing I was worried about missing most from Indiana landscape was trees, but we have three large trees with hummingbird and turtle dove nests in our backyard. Amazing!

We leased a ranch style, one-level home which has eliminated so much stress from our daily lives as it makes supervision of Bo so much easier. Just eliminating the frequent adrenaline surges from large objects flying down the stairs from his hand, on a regular basis, has lowered all of our blood pressure to normal levels.

We are all acclimating to the higher temperatures and doing our best to forgive every blasted person who promised us a “dry heat” as humidity levels have routinely soared between 40-60% since our arrival, with temps around 105 daily. Dry heat, my butt. I’m told this is temporary due to monsoon season, but it seems pretty convenient nobody thought to mention it before we moved. Ahem.

neighborhood

My drive home from work. I smile every afternoon. 

School started five days after Shawn and the kids arrived and was very hectic, initially. Arizona schools frankly are pretty broke and have a terrible reputation. We were very worried about the boys, especially as they came from such amazing school situations. It is something that we bathed in prayer and spent way too much time obsessively worrying over.

Bo was in an essential skills class previously and would’ve returned to the same teacher, Miss Julie’s, classroom had we stayed. They shared a mutual adoration for one another and she challenged him in ways no one else could. More than that, she believed in him, even more than we did, I’m embarrassed to say, and he excelled under her tutelage. The thought of him ending up wasting his time in some of the awful situations I’ve read about, was really scary to me. But God knew. He loves Bo even more than I do. He provided Mrs. D. who is a near clone to Miss Julie. She adores Bo, has the same classroom style and set-up, and believes in him every bit as much. She is so impressed with all he learned under Miss Julie and is keeping her goals for his new IEP. The speech therapist is amazing, as well and has big plans for total communication for him, which is what I’ve been shooting for with him. He loves school!

Eon was fully included the last two years and the plan for second grade was the same in his amazing Indiana school. We were unsure how this was going to fly in his new school, although we knew the law was on our side. We also knew that if the teacher is not, it can be a terrible year. We had his transitional meeting on Friday. His teacher loves him. Yay! She does, however, have 33 kids in her class. He will need more support in the classroom. I may have annoyed his mild special ed teacher with my little inclusion speech, and expectation that evidence-based practice be provided. If she plans to pull him from the classroom some, that’s fine, as long as she shows me the current research to demonstrate that it’s best practice. I just wanted them to be aware of my expectations and goals when we reconvene for the IEP so no one is blindsided and we don’t waste anyone’s time. Overall, they seem like a great team and I think we can work well together to ensure his needs are met. He has, however, been playing them quite a bit and he needed a “come to Jesus” meeting when he got home from school. Turns out, they think he needs help carrying his lunch tray (Ha! Uh, no. Tell him to suck it up, buttercup!) and he’s been laying on the floor if he doesn’t want to do something (um, heck, no! Dad will come to the school to put a stop to that if need be! And, why in the world was he coming home with green/good behavior checks everyday?!?) Anyway, we straightened them out that he is very competent when he chooses to be and he WILL choose to be from now on. Ugh. This child.

moth

Giant moth on our stoop.

The other kids are thrilled to realize there are critters to be found in Arizona, too, although in the desert, not the creek. They are undaunted by the heat and spend at least part of everyday exploring the desert and longboarding in the park.

We gave Ellie, 16, the reins to find us a church to visit, and she, being the awesome big sis she is, found one advertising a special needs program. The website said we needed to contact them in advance, so we intended to keep Bo with us the first service we visited. However, when we were checking in the other kids, the volunteer helping us, told us he was more than welcome to attend that very day and her husband was actually working in his class. She took us there, we verbally told them some info about him, they gave us a form to fill out during the service and bring back and he was good to stay! Amazing! Never have we felt so welcomed and wanted in a church. Frankly, the service could’ve been terrible and we still would’ve returned just for that feeling and relief. It was the first time in 3 1/2 years that we relaxed, and worshiped together, knowing all our kids were well taken care of and learning about Jesus. Turns out, It was actually a great service! Ellie went to youth group that night and has since made some friends. We’ve decided to make it our new home church and are looking forward to getting involved in small groups.

park

Our park.

My job is fantastic and I love it! After twenty years of wearing scrubs, I feel like I’m playing dress up everyday in business attire and it’s fun! (although, my feet didn’t think so, initially, but they’re coming around.) I work for a huge non-profit hospital conglomerate in the acute inpatient rehab department as a clinical referral specialist. (although, depending on who you talk to, I’m also called an acute rehab liaison. Idk.) It’s very different from my previous twenty years as an occupational therapist, but I am able to use my clinical judgment daily (which seemed like I was able to do less and less in the SNF environment), therapeutic use of self, and communication skills I honed as an occupational therapist.

Having my parents nearby is a huge bonus. They have been a wonderful help to us and, even though the drive across the valley is long (a little over an hour),  we see them quite a bit. Grandpa helped me with the kids for two weeks as Shawn returned to Indiana to get the house finally on the market. We were so grateful to have him!

I’ll be glad when Google maps no longer has to help me navigate my daily life and when I start to feel like I belong instead of just a visitor, but that will come.

 

Freaking Out and Doing Nothing

It shouldn’t be this hard. I’m ranting now and emotional and frustrated. This is not the time for rational thought and yet, I know that what I’m thinking is truth.

It shouldn’t be this hard! 

Educating our kids should not be so blasted difficult. I wrote a post here about our struggles to get Eon fully included in first grade this school year. I wrote about observing the first grade teacher’s classroom and talking to her about inclusion and peer modeling. She was totally on board with including Eon and had gone out of her way already to establish relationship with him so he’d feel ready to be in her class. His kindergarten teacher who was so perfect for him last year spoke very highly of her. We were ready.

Until the automated email I received right before dinner this evening, one week before the start of school, telling me Eon would be in a different teacher’s class. I hastily sent an email to the principal asking her if it was a mistake. Nope. Mrs. Fabulous had changed grades. Eon would indeed be in the other teacher’s class.

This new teacher is known to us already. She substituted for a few months during his regular teacher’s maternity leave last year. Eon loved her. She had zero expectations for him and basically treated him like a mascot. The work assigned to him was crap. The work he did in her class was crap. He got gold stars all the time for behavior and she raved about how wonderful he is. But she expected nothing but cuteness from him. He was happy to oblige.

He is not there for cute.

I feel like I worked my butt off last year to get the optimal plan in place for my boy. It was going to be a great year. One email and it is up in smoke!

So now what?!? There are other teachers at that grade level, of course, but I don’t know the first thing about them. Do we stick with the nice, inexperienced (overwhelmed), ableist teacher who may be willing to learn, or do we insist on changing and risk ending up with a teacher who is resistive to inclusion, making the year miserable for all of us?

And how the hell should I know?!? I’ve already been through this once over this very same flipping school year!!!

—————————— I wrote the above over a week ago. I chose to publish it because it shows how quickly well-crafted, hard-won plans can go out the window for our kids with special needs. I didn’t sleep well that night.

Life with special needs is consistent in it’s inconsistency. Whether it’s an educational turn of events or the return of a medical issue once thought conquered, this journey is rarely stable. I laughably find myself waiting for “things to settle down” sometimes forgetting how unlikely that is to even occur, let alone remain.

The trick is to roll with the punches, to be flexible, to have grace in the moment, to not freak out. Clearly, I have that mastered. Sigh. I feel like I used to be more flexible than I am now. Maybe there are only so many punches you can take? Maybe after you get so bruised you just fall down with the lightest of hits.

I admit it’s the other extreme at times, too. Maybe there’s only so much polite sparring you are willing to do before you just go for the sucker punch to end it. (Or maybe, I should actually watch boxing once in awhile before I put these metaphors in my posts?)

Whatever. My point is, I’m not handling the ups and downs well and I know why. I could blame it on lack of support. I tend to isolate myself when I feel stressed which is pretty much all the time, so I haven’t been reaching out to my local tribe of friends. Recently, I lost a great group of supportive online friends with my views shared in this post, in a mutual parting of ways. Support that used to be just a few key strokes away is suddenly not an option.

I could blame it on my terrible self care. My diet is atrocious. This afternoon, while perusing the menu at Panera, I briefly wondered, “When is the last time I ate a vegetable?” I couldn’t remember, so I ordered a salad I didn’t eat. My sweet husband installed a weight bench with equipment down the hall so I could conveniently work out without excuse. It makes a great table for folding clothes. I’ve had a gift card for a massage in my top drawer for months, but I’m filled with anxiety just thinking about making the appointment. I’m a mess.

I could blame the busyness that life with a big family brings or the lousy Indiana weather this summer or the fact that I can’t slow down the racing clock no matter how hard I try. But the truth is, none of these is the actual problem.

I don’t run to my Savior in the storm. I try to walk on the water alone, to battle the waves on my own strength, until soon my head slips beneath. I was never meant to face this life that is beyond me, alone.

Yes, I am the vine; you are the branches. Those who remain in me, and I in them, will produce much fruit. For apart from me you can do nothing. John 15:5

Nothing. Nothing productive, nothing of value, nothing helpful. I waste so much time apart from Him. I do nothing.

——————————— After emailing back and forth, our principal called me Friday morning. I had shared with her last year my thoughts on the substitute teacher. Before I could say anything, she assured me that she’d spoken to her specifically about Eon. “I’m not sure I used the word ‘mascot’ but I think I probably did because it did a good job conveying how you felt he was treated.” She convinced me that the teacher, while inexperienced, is very talented and willing to learn. Together, she was sure we could turn her ableist mindset around.

In the end, we decided to stick with the inexperienced teacher who really likes him, hoping we can train her to teach him. When I told Eon who his teacher will be, he pumped his fist and exclaimed, “YES!” He may be a lazy kid, but he’s smart.

She has since communicated with me several times and is very enthusiastic and on board with our approach for him. He has loved the first few days of school. If I can remember where to turn when things go awry, I think it will be a good year.

Self Contained Classrooms: The Nursing Home Restraints of 2015

In our recent IEP snafu with Eon, I discussed his case with several people I’m close to who work in school systems. Some of them were very supportive of our push for inclusion and some of them were not. Those that were not met me with great resistance at every turn. All the research I brought up was scoffed at with “real world” examples of inclusion failures and negativity. They attempted to convince me that full-inclusion is an impossible goal, even though so many parents have fought for it successfully before me to the benefit of their children.

In the face of years of research, schools that have successfully implemented inclusion, and other countries that have gone before to mandate inclusion as default, most school systems and staff continue to insist that it’s impossible and will never work. Parents who push for inclusion and demand what is lawfully the education their child deserves are labeled “difficult” and “unrealistic”.

And it all seems so familiar – the resistance to change, the insistence on old ways contrary to all evidence, the negativity.

Suddenly, I remembered. I worked in long term care facilities, nursing homes, during college and all through occupational therapy school. At the time, if a resident had a fall, history of falls, or was at risk of falling, he was restrained in his wheelchair in some way, usually tied in with a posy belt or vest to keep him seated so he would not fall and hurt himself. posybelttieIn the eighties, research became prevalent showing that physical restraints of residents didn’t actually prevent falls as assumed and actually increased injury, as well as decreasing quality of life. At the time, at least 40% of nursing home residents had a physical restraint, although some estimate the numbers to be as high as 70%. In 1987, the Nursing Home Reform Act (OBRA ’87) was passed guaranteeing nursing home residents the right to be free from chemical or physical restraints imposed for the purpose of discipline or convenience.

BUT, in light of the new law, nothing changed. 

Companies/facilities were made aware of the law and most educated their staff on possible alternatives to restraints and restraint reduction. But then when a resident fell, the first response was to tie them down. Because the law was not enforced, any other option was rarely discussed.

In 1990, federal regulations mandated restraint reduction policies in all long term care facilities with enforcement. The uproar was deafening. Even though all caregivers had been educated on alternatives to physical restraints, staff could/would not think outside the box of the way it was always done. Over and over I heard nurse managers and therapists bemoan how this new program would “never work”, “falls are going to increase,” “residents are going to get hurt,” “we don’t have enough staff to watch these people!”

I sat in a meeting and listened when, so ingrained was the old way, no one could come up with any possible alternative to a restraint after a fall. Silence reigned as they “brainstormed” solutions. When someone finally suggested a toileting schedule as the fall had occurred when the resident was taking himself to the bathroom, they were met with a chorus of why that wouldn’t work even as it was documented as the intervention of choice.

But it did work. And twenty-five years later, less than 5% of nursing home residents are restrained with no increase in falls and lower incidence of serious injury. I sit in meetings now after a resident falls and no one even mentions restraint as an intervention. It would never occur to them to do so. In fact, when I recently had a resident for whom a self-releasing belt might have actually been appropriate as a very short-term solution, no one thought to suggest it.

So when school staff members tell me that inclusion “doesn’t work,” I don’t believe them. I know from experience that old ways die hard and change is painfully slow in coming. I know that staff members, no matter how well-meaning, are people, and people don’t like change. The known is comfortable. We always default to the known. The familiar is easier.

But easy is not better.

One of Eon’s special ed teachers was new this year. She admitted that she was taught from an inclusion perspective in college and even did a research paper on it while student teaching last year. This year, one year into her teaching career, she’d already been brainwashed by the system enough to suggest he be taken out of full-inclusion where he was thriving and placed half days in a resource room for next year. Why? Basically, because that’s how they do it at that school.

Thinking outside the box often takes external motivation. Without the feds enforcing the OBRA ’87, nursing home residents would still be tied down. Nursing home administrations and staff didn’t stop that barbaric practice because of the compelling research, or a change of heart. They didn’t stop because of outraged family members. (Families didn’t protest, because they believed the staff knew best. Sound familiar?)

No, they changed their practice only under threat of losing federal funding.

And it begs the question. Is IDEA enough? We have the law on our side, although plenty of school systems are making us prove it by taking us through due process. Is it enough that some of us are willing to fight for our kids on an individual basis? Will we ever see real change this way? Or, twenty-five years from now, will another mom blogger be writing a post on the frustrations of getting her first grader included in general education?

I don’t think it is enough. I don’t think real change will happen until we see legislation and enforcement of legislation (aka, the loss of federal funding) making inclusion the default placement with adjustments from there, if necessary. Money talks and, frankly, it’s the only language school systems are forced to obey.

Please note: I, of all moms, recognize inclusion is not the right setting for every child. My other son, Bo, will start kindergarten next year in a self-contained classroom which is where he will thrive. But, inclusion should start out on the table at the IEP. We shouldn’t have to push to even get it in the room.

Self-contained classrooms, like nursing home restraints, should be the exception, not the rule.