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.

The IEP

A year ago, I walked into Eon’s kindergarten transition (IEP) meeting loaded for bear. We wanted full inclusion for our son and we weren’t leaving until we got it. We didn’t realize until near the end of the meeting that inclusion was the plan and had been their plan for him all along. I left the meeting like a deflated balloon, slightly dazed and confused, but relieved.

It was a great year. My biggest fear was that his teacher would resent having him in her classroom and be harsh with him or, conversely, she would love him, but have low expectations for him and treat him like a mascot. Neither happened. His teacher was amazing and just perfect for him! She treated him as she did all the other kids in her classroom and expected him to behave as such, and he did. She adored him, but was immune to his charms when he attempted to manipulate her to get out of doing hard work. In short, she had his number. Eonbeach

He thrived. He is a beginning reader (reading!), is doing simple addition and subtraction problems, knows all his shapes, can tell us all the parts of a story, etc. He got himself off the bus and to his class like a boss, hung his backpack, circled his lunch menu, put his folder in the teacher’s basket, and started his seat work every morning.

We received nothing but good reports. So this year, I was a relaxed mama walking into the IEP meeting. And for forty-five minutes we heard about all the progress he made toward his IEP goals, how well he fit in with his typical classmates, how good his behavior was, what a joy he was to teach, etc. After every member of the team said their piece and filed out, I was stunned to hear the recommendation from the mild special education teacher who was running the meeting.

“So, we want to pull him out for the reading and math blocks next year and take him to the resource room so he can focus on his goals in there.” She continued talking and, as she added up the time with therapies pulling out, she divulged he would be gone from the general education classroom about 50% of his day.

What the what?

I sat there like a deer in headlights with a phony-try-not-to-cry smile pasted on my face. I managed to ask what the reasoning was and it was basically because “First grade is intense and moves really fast. He won’t be able to keep up or stay on grade level. This way, he’ll be able to focus on his goals in a small group setting.”

I did not object. I felt bushwhacked and completely unprepared. We were not asked to sign it because PT still needed to complete her goals. I would not have anyway. That much I knew. I cried the rest of the day.

And then I got busy and brushed up on my knowledge of IDEA. Turns out, a child cannot be moved to a more restricted environment (aka, resource room or self-contained classroom) solely based on his inability to maintain grade level. He doesn’t have to maintain grade level. That’s why he has an IEP! He only has to make progress toward those goals. Which he clearly was…in an inclusive setting.

I called the mild special ed teacher the following week. I apologized for not speaking up in the meeting and told her about our misgivings. I laid out our vision for Eon and inclusion. I told her about the law and asked that we reconvene. I asked to observe the first grade classroom prior to the meeting. She agreed to all of it but again told me she thought he’d do “better working on his goals in the resource room.” I asked her for research to back up claims that children make more progress in self-contained classrooms or resource rooms. On the face of it, it sounds good and seems to make sense, but I’m only seeing research that supports inclusion for desired outcomes. She is a new teacher and told me that she actually did a whole research project/paper last year supporting inclusion and didn’t have anything to give me to contradict it.

I continued to cry much of the week (my singular response to stress of any kind) and continued to research and make sure I knew his rights under the law. I was frustrated that I needed to know all that, frankly. Good golly, we’ve got enough on our plates, for crying out loud, without having to school the school system on their legal responsibilities toward educating our child.

I agonized over whether this was the right decision for Eon. I know the research supports inclusion for the outcomes we desire for him – increased independence as an adult, improved odds for secondary education, increased chance for meaningful work as an adult – but if this school doesn’t really believe in inclusion, the school year could be a disaster.

Basically, I pushed and then second-guessed myself for pushing the rest of the week. By the time I went to observe the first grade class, I was an emotional basket case. Thankfully, when I waffled on my inclusive resolve to the mild special ed teacher, she wouldn’t hear of it. She reminded me, “He can always go into more restrictive if he needs to, but there’s no reason to start his year there.” Eon’s first grade teacher for next year was equally as wonderful and fully supportive. She’s a firm believer in peer-modeling and reminds me a lot of his kindergarten teacher.

The next day, we reconvened the IEP. I was very clear this time in sharing our vision that Eon be included throughout his school career. I reminded them that in our current culture, a person can be successful in life if they get along well with others, even if they’re not the sharpest tool in the shed. The major way Eon is going to learn to read people, to experience community, to develop empathy, to reciprocate socially is by being with his peers. Everyone was on the same inclusive page. We added in supports to ensure his success. We discussed plans to modify his curriculum and tests. We discussed ways we plan to communicate and trouble-shoot issues as they arise. His team was wonderful! It was very positive and affirming.  And I breathed a big sigh of relief…and didn’t cry.

I want to emphasize that while I am a huge believer that inclusion is absolutely the right placement for EON, I am a bigger believer that every parent and team needs to decide the right placement for their individual child. I am amazed and appalled at the internal bickering I see among those in our Down syndrome community, especially when other parents want to use their own choice as a blanket decision for all children with Down syndrome. We are talking about Individual Education Plans. 

I have two boys with Down syndrome who are as different in personality, preference, and ability as night and day. The only things they have in common are a last name and an extra chromosome. Eon will be attending first grade, fully included, in a general education classroom next year. BobeachHis brother, Bo, will be attend kindergarten in another elementary school in a self-contained classroom. Those are the right placements for both boys and they will excel in their own ways. We couldn’t be more proud of each of them. To put either child in the other setting would be a grave mistake and such a disservice to that child.

We need to trust each other as parents that we’re doing the best we can for our kids. We need to recognize that none of us has a crystal ball but each of us would kill for one to know the best decision in every situation for our precious kids. If someone seeks your knowledge or advice, they are not giving you decisive power into their lives. Don’t take it personally if they choose to make a different decision. You don’t have all the information and you certainly don’t have the relationship, the love, and the guilt they do in parenting that child.

For those of you facing the IEP, you can do it. There is grace for that.