When Little Outgrows Big

EonKJI worry about the day she outgrows him. They are best friends now, two peas in a pod, attached at the hip. She pines for him during his long school days and waits eagerly for the bus at the end of the day. He is always delighted to see her. She understands his limited speech and doesn’t mind that he calls her only “J” and not fully “KJ” as is her given nickname.KJ&Eoncornhole

He is big brother by only 21 1/2 months, but they help each other, she by zipping his jackets and other fine motor tasks and he by flipping light switches or door locks out of her reach. I’ve noticed other ways she’s starting to help, though. Turning on his show because he can’t yet master the complicated remote is one. Taking the lead in what games they will play is the more concerning other.KJ&Eoncow

As she has passed him in speech, fine motor skills, and tech savvy, she will pass him in maturity, as well.

And I worry. Will she still adore her big brother? Will her face still light when she sees him? When her friends replace him as a confidante, will he be heartbroken?

KJ&EonblocksWhat happens when she is given more freedom than he as her maturity exceeds his? How will I soothe that injustice for my boy and still allow room for my girl to find her wings?

I try not to let myself go there. The anxiety wraps it’s tendrils around my heart like a vile weed. I need to cut it off, to pull up the roots, and enjoy the now. For now, it is a love fest, a tight bond, an amazing friendship.

It is enough. There will be grace for later when later comes. 

KJ&Eonpicnictable

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.

I’m Tired of Holland and I Want to Go Home`

One of the first things presented to us after the birth of Eon was Emily Perl Kingsley’s famed essay, Welcome to Holland. I was touched by the sentiment, but never a huge fan of the piece. Basically, it likens having a baby with special needs to planning a special trip to Italy, and then being diverted to Holland forever. It acknowledges the grief associated with the change in plans, but points out that Holland, while not Italy, has its own unique beauty.

I hadn’t thought about the Holland analogy in years until a friend who’s getting ready to adopt a baby with Down syndrome re-posted it in her blog. It, of course, caused me to reflect.

Eon was healthy. He’s also number six of our eight children, so we were pretty seasoned as parents. We didn’t really experience the grief so many do when they embark on this journey. We entered Holland and immediately moved to the peaceful and beautiful countryside to skip among the tulips. Sure, there was the occasional language or cultural barrier to navigate, but it wasn’t anything we couldn’t handle and I was more than prepared to take it all head on.

Fast forward a few years and we added Bo into the mix. Still dealing with the known Down syndrome, but also tacking on autism, chronic health problems, and adoption issues. And, with Eon getting older, we now have to fight the IEP battles to make sure his educational needs are being met. Also, did you know that mothers of children with autism have stress levels equivalent to soldiers in combat? 

I feel as if we moved from the placid countryside of Holland into the capital city and right into the heart of gang wars. (My apologies to the actual country of Holland. I have no idea if you even have gangs.)

I’m tired. No, scratch that. I’m exhausted. I don’t want to learn more of the language, or suffer from the loneliness of not fitting in, or eat foods foreign to me. I don’t want to walk about and listen to people jabbering in another tongue. I don’t want to shield my children from enemy fire. I don’t want to duck and run for cover or cower every time I hear a loud noise.

I’m tired of Holland and I want to go home.

I long for the familiar, the comfortable, the easy. I miss the days of doing things without thought. I want to take my boys to normalcy.

bogradI hate that I have to know the Individuals with Disabilities Education Act in its entirety just to make sure my sons are afforded the educational environment that is lawfully due them. It frustrates me to have to spend hours in research prepping for a new specialist appointment to ensure the doctor orders the correct tests and medications or to point him in the right direction of the likely diagnosis. The adrenaline surge experienced every time an older child exits the house and the alarm sounds leaves me in a constant state of high alert, terrified that this may be the time Bo escapes with tragic results.

I wish I could trust anyone besides his ever-busy oldest siblings to watch the Serb, and even then, I wish it were for longer than an hour or two if during waking hours. (And still my constant checking in drives them batty.) I, selfishly I suppose, want to go to weddings and parties with my handsome husband instead of the carefully planned divide and conquer routine we’ve orchestrated for social engagements. I’m tired of packing a diaper bag when my youngest is a typically-developing, fully potty-trained four-year-old.

I hate that I freak out over every green snotty nose wondering if my weekend plans are safe or if I should go ahead and pack a hospital bag, just in case. I’m frustrated when my son tries five times to tell me something and I hear the same unintelligible sound five times and I just don’t understand and he gives up and whatever was important to him at the time stays with him and our moment to connect is lost.

But mostly, I’m tired of interpreting our world to others who don’t live here. It literally pains me to feel my boys have been devalued, either by a stupid social media comment, rude stare at the grocery, or casual remark by a close friend. I hate feeling like I have to be positive all the time or someone may not understand that, while my life is hard, I would choose these boys a hundred times over. eonpool

Holland sucks, sometimes. Yes, Emily Pearl Kingsley, it does have windmills, but where do you find the time to look up and enjoy them?

I have a choice to make. Sometimes daily, sometimes just when I hear the bullets flying and I find myself ducking for cover, longing for the good old days of home. I can wallow in the hard. I can live in the frustration and the difficult, becoming bitter.

Or I can embrace the adventure of a life uncommonly lived. I can relish in my daily opportunities for growth and new experiences. I can be overwhelmed with the beauty of relationships I have that others pass by. There is community among the ex-pats of metaphorical Holland. The marginalized have a camaraderie all our own.

If I hadn’t landed here, I would still be living in my fishbowl of sameness, loving all the people who live and think like me. I would never have learned the stories of my fellow sojourners, come to value their perspectives, share their pain. I’ve found that it’s not just the parents of kids with special needs who land here. This Holland is a home to not just those with a physical or intellectual disability, but also people of color, or those with mental illness, even the LGBT community, any of us who are different than the accepted masses.

Because there is a place for us here. 

So, in the middle of my longing for normalcy, for what I remember home to feel like, do I really want to give up all I’ve gained, all I’ve learned, all I’ve become?

Not really. For I’ve discovered the true melting pot is Holland and here there is grace for us all.

Stop and Pick the Lilies

He said something like, “Fleverse!” while excitedly signing and pointing to the flower bed at the same time. “Flowers? You’re right, Eon. Flowers do make me happy!” I responded. I was asking his little sister and him the ‘Questions About Your Mom’ that have been going around Facebook. He had just answered, “What makes Mom happy?”

dandelionsApparently, my enthusiasm at all the dandelion and clover bouquets he’d been picking for me convinced him that flowers are my favorite things. Every wilted dandelion brings an exclamation of delight from me. I love that he thinks of me when he’s outside doing his thing. I know these days are fleeting.

Except now my lilies are in bloom. I don’t want him to pick the lilies.

The first time he brought me one, proud smile on his face, I thanked him and then gently explained, “We don’t pick those flowers.” I showed him all the weed flowers in the yard – the dandelions, violets, clover, etc – and encouraged him he could pick all of those, but the flowers in the flower beds are for looking only. We don’t touch them. We don’t pick them.

The next day, he brought me another lily, same proud smile lighting up his face. Same conversation followed. Knowing that Down syndrome slows his processing and makes it take longer for lessons to stick, I was patient.lilies

By about the fifth time, my patience was wearing thin. “Eon, stop picking those flowers!” His head dropped and shoulders slumped. “‘K, mom,” he said, softly, eyes welling up. Feeling like a heel, I hugged him tight, thanked him for his sweetness and again explained the rule about flower bed flowers.

Yesterday, I overheard his daddy say, “Did you pick that for Mom?” A confident, “Yep!” followed from Eon. “Okay, but I don’t know what she’s going to say.” A much more subdued, “Yeah.”

I decided right then how to respond.

A hesitant boy came into my room, lily in hand, not quite meeting my eye.

“Is that for me?”

“Yeah, Mom.”

“It’s beautiful! Thank you! And thank you for thinking of me. You know I love flowers, don’t you?” Relief swept over him as a huge smile lit up his face.

Because, what are flowers for if not to bring joy to those around them?

Later, when I saw the flower laying on the table where he brought it to me, I chuckled and told his dad, “He can’t NOT pick them.”on table

And something clicked inside my heart.

I want to be like that.

I want to be someone:

  • Who can’t NOT delight someone when the opportunity presents.
  • Who must shine a light when they get the chance.
  • Who sees beauty and doesn’t just enjoy it selfishly, but is compelled to share it. 
  • Who is willing to risk rejection to do so.
  • Who thinks about those they love in the middle of their activities.
  • Who sees beyond the flower to the smile it could bring.

I want to love big, with all of me. I want to share, without pretense. I want to give, expecting nothing in return. I’m supposedly “cognitively intact,” so my emotional processing is a little slow and it takes longer for these lessons to stick. When I grow up, I want to be like my six-year-old son with Down syndrome. He has much to teach me still. eonflower

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.

Six

Six years ago, on January 29th, I gave birth to a baby boy. The delivery room got very quiet immediately following his birth until my nurse midwife said, “Tara, the reason we’re looking at him so closely is that he has features consistent with Down syndrome.”

It was like the air was sucked from the room in that instant. Up until that moment, Down syndrome was just an idea, a flight of fancy. I had been given a twenty percent chance earlier in the pregnancy and, at the time, I found the idea kind of exciting. This pregnancy, my sixth, was different, special somehow. I researched all I could, thought I made peace with it, and then honestly put it out of my mind while caring for my other five kids, never really thinking about it again.

Until those air-sucking words.

My mind raced to make sense of the permanence and the magnitude of what she was saying. I managed to confidently croak out, “I wondered about that,” as if it had been true any time in the last several months, instinctively protecting him, my son, from the pity of those in the room. I willed them to know that he was going to be fine. We were going to be fine.

And then I held him. And I realized he was perfect. He wasn’t some scary diagnosis or some drooling adult grocery-bagger I’d conjured up in my imagination, he was a perfect little baby boy who needed his mama. I knew then we really were going to be fine.

Six years later, I smile at that scene in my memory.

Simeon Israel, meaning One Who Hears and May God Reign, melts me. His powers of persuasion remain unmatched in the family. He is undaunted by rejection, choosing instead to find another source to get what he wants. In a family this large, there are plenty of people to charm to get his way and he is crazy good at it.

He has a well-developed sense of humor which fits in well with this family, and a surprising brand loyalty which really doesn’t. We are fairly frugal folks and are committed to getting the most bang for our buck which often means buying generic for things that don’t matter (and we have very few things that matter to us). Eon, however, is a child of advertising. Slick marketing campaigns work on him. The other day, we argued in the frozen aisle of the grocery store for what seemed like ten minutes over chicken enchiladas. He had decided that’s what he wanted for his birthday dinner and reached for the Stouffers box. I stopped him. The store brand box was $3 cheaper. THREE DOLLARS! For the SAME THING! He was having none of it. I made him read what it said on each box. (Chicken enchiladas…big words for a kindergartner!) I showed him that they had the same quantity and we counted that out on our fingers. I made him read that they were packaged in the same place. Nope. He finally decided on Salisbury steaks, instead. (Swanson. I know, Encore was cheaper, but only by 90 cents and I could live with that. Picking my battles, people. Not the hill I want to die on.)

His sense of presence is a gift which seems to be shared by many people with Down syndrome. Eon knows how to be fully present. He lives in the moment. While he remembers the past and looks forward to the future like the rest of us, he completely embraces the present. I am learning so much from him.

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He’s learning how to lose. We’ve been playing Uno since Christmas. I’m very competitive and an obnoxious winner. I do a little touchdown dance and everything. Eon burst into tears every single time he didn’t win. I’m afraid I wasn’t very helpful, uttering consoling lines like, “You’re not the only loser. KJ and Zak are losers, too!” While I did hug him, I may also have said other encouraging things like, “Suck it up, buttercup.” I’m happy to report that he now does a slick little dance and wags his finger in my face calling me a loser when he wins, er, I mean, he doesn’t cry anymore when he loses and simply yells, “Play again!” I’m proud of his maturity. (And, yes, I realize I could learn from him.)

He cares deeply about the people in his life and is empathetic and sensitive to everyone’s moods and feelings. I find it so ironic that, while he is fully included in his current classroom, I know it will likely be a fight to keep him included in the future and yet, he is the least likely to exclude anyone from anything. The night before his birthday, he got to go to dinner with just UpcycleDaddy and me, as is our birthday tradition for our kids, and he was so sad that his siblings had to stay home. He kept trying to convince us to just take along one or two because he hated the thought of leaving anyone out.

He’s a beautiful soul, fearfully and wonderfully made. And he loves life and everyone in his. What more could a mother want for her child?