Reports

Today was a big day for Eli. Well, actually, it was probably more like a big day for us (his parents). About every six months, Eli has a team evaluation at the Thomas Center for Down Syndrome Services at Cincinnati Children’s Hospital Medical Center. This evaluation is a big deal. The team consists of a developmental-behavioral pediatrician, nurse, dietician, social worker, speech-language pathologist, physical therapist, and occupational therapist. I’m not exaggerating when I say these providers are top-notch–we are so fortunate at CCHMC to have access to some of the best providers in the country. While the process can be overwhelming (for the children and families), it is vitally important. Their reports provide information for insurance companies and other outside agencies. The evaluation, in my opinion, is also critically important with regards to early intervention, which we know vastly improves the outcome for individuals with Down syndrome. I also believe that it’s important to be connected to people who are genuinely interested in Down syndrome issues and who really see our kids instead of just their diagnosis.

As an Intervention Specialist, I’ve been on the provider-side of similar meetings. I’ve evaluated students’ ability in reading fluency, reading comprehension, written expression, behavior, adaptive behavior, social-emotional skills, employability skills, independent living skills, and functional academic skills. I’ve had many conversations with students and families to prepare them for the results–I just want to be honest with you, I often tell them. This meeting might not be fun. It might not be easy to hear. We might spend most of our time discussing your student’s challenges instead of her strengths, even though we know she has many strengths. I apologize for that up front and go on to tell them about why the data is so important.

Still, I’m not sure that my disclaimer takes the sting out of finding out that your 17-year old student has the functional academic skills of someone almost a decade younger. Or that your child, whom you adore regardless of disability or diagnosis, can’t count money and doesn’t recognize social cues. It’s hard to have those conversations with parents and caretakers. And students. Hard.

Being on the other side of these evaluations is something different entirely. Even though I know that it might not be pleasant, I still have to prepare myself before these evaluations. I have to remind myself of the purpose. And I have to affirm that no matter the outcome, my love for my son will not change (except maybe that I might love him a little more just for working so hard, especially if he’s being Captain Adorable, which is most of the time.)

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No, seriously. Just look at how stinkin’ adorable he is.

I wasn’t able to go to Eli’s last evaluation in October–I was trying to avoid missing work, so my husband took him. That was tough for me–I don’t like missing anything, especially appointments with so much riding on them. I also think that since I “speak their language,” I get what they’re saying a little better than my husband does. I consider his difficulty explaining the evaluation to me–or maybe my difficulty understanding his interpretation of their interpretation–to be proof enough. 🙂 Anyway, I had a hard time following him after the last appointment. And when I got the reports in the mail a week or so later, it was like getting punched in the gut. Even though I’ve talked parents through this same thing, I wasn’t prepared for how hard it is to see those words in black and white, to have it framed in terms of percentile ranks and typical peers.

And I thought the appointments themselves were overwhelming? The appointments have nothing on the reports.

I sought the comfort and advice of some wise friends (who also happen to be Ds moms), who reminded me (again) of the purpose of the reports. They also reassured me with I’ve been there toos and It’s oks, like any good friends would be obliged to do. 🙂 It didn’t take long for me to catch my breath, to stop feeling like I’d had the wind knocked out of me. And I thought about my students–how well they’re doing–and focused on moving forward. We plowed ahead with therapies (physical and speech), and I made a purposeful attempt not to compare Eli to his classmates at day care or worry about what he should be doing at his age. (Except for the time after a well-baby visit when I sent my BFF a text to see if her 1-year old used a spoon…) By the time his last well-baby visit rolled around with his primary care doctor, I laughed when the nurse asked me if he runs. No, I informed her. He doesn’t even walk yet. But I’m not worried. There are 2 students with Down syndrome in my sister class at school. They are both walking just fine as teenagers. We also go to therapy every other week and he just got orthotics, so I’m pretty sure he’ll walk eventually. And even run too. 🙂

I was excited going into today’s appointment. And while I was hoping that Eli would knock the socks off of all the providers on his team, I was also prepared for (and ok with) the opposite to happen. Since I’ve been avoiding timelines, I really couldn’t say if the things he’s doing are developmentally appropriate. I had a fleeting moment of oh, crap!, wondering if we’ve been doing enough with him. I rehearsed conversations in my head and tried to prepare answers that would paint a very rosy picture of our son and his abilities. And then I realized that I was being ridiculous. We have nothing to prove, nothing to lose. We’re just going to go in there and be honest. What he can do is ok and what he can’t do is ok too. And that’s pretty much how it played out…

Except that Eli took 5 steps over the weekend–5 independent, wobbly steps. And I was so excited I emailed his PT. But never heard back from her. And when I saw her today, she beamed at us and said, I hope you don’t mind that I didn’t respond to your email. I’m just so excited for him that I didn’t want to cheapen my reaction by telling you in email. Cue the waterworks. My eyes filled up with tears immediately and I felt for a second like I couldn’t breathe. I made the ugly contorted face I make when I’m trying not to cry. It’s very attractive. 😉 My point is that I had a can’t breathe moment, but it was a good can’t-breathe moment. Then I sat back and let them do what they do. These people really care about my son. No question. So I was relaxed and honest. I said no to the things he doesn’t do yet and I described the things he does well. They interacted with him, watched him eat, took notes, and talked to us some more. Eventually, they stepped out to discuss the results, and we played while we waited to hear their analysis. (We played while being acutely aware that we’re on camera every time we step into one of their treatment rooms. Well, I’m pretty sure Eli, Evie, and John don’t care. But I care because my pants have a tendency to ride down in the back. So maybe I should say that I tried to play while also making sure that at no time was I mooning the staff we love so much.) 🙂

They walked back in with smiles on their faces. We’re so proud of him, they said. He has improved so much since his last visit! And finally, they rephrased all of the data they had just thrown at us. And we were left with the following information to digest:
In all developmental areas, Eli is in
the low average range for a
typically developing child.
Did you catch that??
Not below
average. Not average for a
child with Down syndrome.

But in the low average range for a
typically developing child.
In other words, in all areas,
he is considered to be within the
average range for children his age
without Down
syndrome!
Cue the waterworks and frozen-ugly-cry-face again. That is some heavy information for a parent to digest. Heavy and wonderful.

Now, I want to be clear that I’m not sharing this because I think we’ve done something special that other parents haven’t–I don’t. And I don’t think that Eli is better than other kids with Ds. This kind of stuff can be very hard in the Ds community. Sometimes, it seems like parents are competing to show whose child is the most “normal.” And that’s ok–I understand why we do that. But that is not at all my intention in sharing this.

Rather, I share this for awareness. I share this great news to show that individuals with Down syndrome are more like their “typical” peers than different. I share this to ease other parents’ fears about what having a baby with Down syndrome is like, what it means. It means good things. It means hard things. It means celebrating. It means rejoicing in small–and large–victories. It means being patient and accepting. It does not mean incapable. Or useless. Or worthless. It can, and for so many families does, mean average. Maybe low average. But still average. And extraordinary. Yes, average and extraordinary. Both at once. Extraordinary because of the hard work such little people put in to be average. Extraordinary because of the lessons they teach us when we think we’re teaching them.

We spent the rest of the afternoon celebrating. Although, I had already made up my mind that we would be celebrating no matter the outcome of today’s evaluation. I packed a picnic lunch ahead of time and we were going to the park regardless. And yes, I am proud of my son. Very proud of him. I would be proud of him even if things had turned out differently. I’m proud of my daughter too. She was a great helper today and a very patient 4-year old during the long evaluation.

I do not take Eli’s progress for granted. I know that at any given time, things could change. I know that life is unpredictable and we could be faced with a very different report 6 months or even 6 years from now. And if that happens, we will celebrate then too. Because like I said to the occupational therapist today, He can get the spoon to his mouth if we put the food on for him, but he can’t get the food on the spoon himself. But I’m not worried. My students with Down syndrome eat with a spoon just fine. I know he’ll get it in his own time.

Sometimes, I worry. But not today, not about this. Today, I am not worried.

I want to share some more pictures from our lovely afternoon. Enjoy! (Oh, and holy smileys. Sorry about that. I went a bit overboard with the emoticons today.) 😉

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Anxiety

Sometimes I worry. A lot. I love the Momastery blog, and when Glennon posted the “I can’t keep calm because I have anxiety” shirt, I think I did a fist pump and declared that the shirt had obviously been made for me. Those closest to me have seen my hand-wringing-can’t-sleep-can’t-eat moments when I fret over everything in a vain attempt to somehow control that which is very clearly out of my control. Throughout my life, I have learned how to mask this from most of the rest of the world, and I don’t even think I really understood what was really at work on my mind and body until recently. I could go on and give you more specifics about this, tell you things that would make you either think damn, this lady has issues or ohmygosh, I can relate. But that’s not the point of today’s post. The point of today’s post is to offer a little insight about the type of worries those of in the world of special needs face.

I’m a teacher. A special education teacher. An Intervention Specialist according to my license. My work days are spent in a self-contained classroom teaching a transition-based, employability and independent living skills program to high school students nearing graduation. We focus heavily on post-school outcomes–living and working in the community with minimal or no support, participating as an active member of the community, and improving overall quality of life. When students are referred to me, we consider those things primarily–is she employable and what’s her quality of life likely to be if she doesn’t get some specialized training in this area? Some people no longer believe programs like mine are necessary, that inclusion solves every problem. While that topic deserves a post of its own, let me just say a couple of things: 1) I really really believe in inclusion–it is fundamentally important to everyone, not just those with special needs; 2) I also really really believe in my program, in the idea that inclusion isn’t enough and much like their peers who attend career/technical programs or take college prep classes, my students deserve to participate in a specialized curriculum that is geared toward their unique needs; 3) what I teach is just as important as traditional subjects, and sometimes, for these students more important; 4) a comprehensive, excellent education allows students to access services across the continuum–that a great education can and does strike a healthy balance between the inclusion setting and the resource room setting.

Now, to get on with my point…Our class (along with our sister classes across the hall) schedules regular community outings throughout the school year. This allows students to practice their banking and budgeting skills, learn how to shop for groceries and other items and handle money, participate in recreation and leisure opportunities, and so on. Every time we go into the community, I worry about how my students will be perceived. Did you catch that? I don’t really worry about how my students will behave in the community, about how they will conduct themselves–even my students that have some behavioral issues in the classroom have demonstrated excellent behavior in the community. But I worry that other customers or patrons will be annoyed with them. I worry that store clerks will roll their eyes when we walk in or follow them around, expecting them to make a wrong move at any moment. I worry that other people will simply ignore them, pretend they aren’t there, effectively stripping them of their humanity and dignity by imagining they don’t exist. And I worry that my students will pick up on all of this–they are, after all, sensitive souls, and they do, like the rest of us, experience the normal range of human emotions.

By now, you’re probably thinking this is one paranoid chick. It’s ok because yes, yes I am. And I know that I am because our experience in the community has been overwhelmingly positive. Stores and restaurants have been welcoming and accommodating, customers at the bank and store have waited patiently while my students finished their transactions, sometimes needing coaching from a teacher or staff member. But I do believe the fact we’re there as a group benefits us. It’s much easier to express one’s impatience or disapproval when there’s only one person with a disability holding up the line. It’s much easier to look through them or avoid eye contact when you pass only one person with a disability in the aisle. It’s not so easy when you come upon a large group of these lovely folks, especially when they are protected by the armor of their teachers and paraprofessionals. 🙂

But back to my point. Again. Yesterday, we took our students to the park after our other activities were finished. We were planning on doing a shopping activity in a local mall. Students were going to plan an appropriate outfit for a job interview. But it was a beautiful day. And at this point in the school year, we all needed some sunshine. So we decided the rec/leisure component of our program would trump the practical aspect of our program for the rest of the afternoon and off to the park we went. On the way, I was calm, excited. Not nervous, not worried, like I often sometimes am. And then we pulled into the parking lot. And it was like a switch flipped in my brain. Oh, shit. The park was buzzing with energy–there were kids everywhere, out with their parents and caregivers to enjoy the beautiful weather. And these kids were younger than our students. Much younger. As we got off the bus, I felt my breath catch in my throat. I’ve always been protective of my students, but now–since Eli came along–I’m fiercely protective. It bubbles just under the surface and it doesn’t mean that I coddle my students or “mother” them. And I have to deal with problem behaviors sometimes that make me want to pull my hair out and render me exhausted. But they are still my students. We spend most of the day together. And ultimately, it doesn’t matter what challenges we face together because it’s my job to face those challenges with them. I care about them deeply. The day that I stop caring is the day I know it’s time to move on.

As we walked toward the park and I glanced around at all of the other people, I wondered how they would react to our students. The range of their abilities is great, and in some cases more noticeable than in others. I followed closely behind my students–many of whom headed for the playground–fully expecting to see parents grab their children and whisper to them to stay away from “those kids.” My mind went into overdrive and I imagined conversations might go something like this:
Mom (in a strained whisper, eyes darting wildly around the playground): Kid, come here! See those kids? I want you to stay away from them. Stay out of their way. Don’t go near them.
Kid (in that too loud, too public voice kids so often use): What, Mom? Why? What’s wrong with them?
Mom: Ssshhhhhh! Nevermind. Just stay away!
Kid (getting louder): But, Mom??!!
Mom (straining to hide frustration at this point): Because I said so. And because they’re…different.

Yes, as crazy as it sounds, I really expected to see at least one mom do this as my students stormed the playground. I imagine how our group might have looked–my students, with their young adult bodies, running with the glee of children, thrilled with the prospect of swinging and climbing and playing basketball and basking in the sunshine. Few people would expect them, at first glance, to be so excited about a park and a playground. I think about these things not just for my students, but also for my son. Because the older he gets, the harder it will be to blend in, and the more obvious and pronounced his differences and challenges will become. Babies and small children like my son seem to fare better than adolescents and adults; people have more patience and tolerance because they’re so young, because they’re so cute.

I have to say that my fears yesterday were, ultimately, unfounded. Although I did notice a pair of women exchanging a hushed conversation while they pointed at a few of our kids and looked around, not one mother snatched up her child and left the playground, and not one sitter told her little ones to stay away. We even got a few knowing smiles from people that were either being polite or approved of our outing and the fun our students were having. One young man even invited a group of our young men to join him on the basketball court. Otherwise, for the most part, we were ignored. Which I suppose in our often-socially-awkward-and-contradictory American society, is what a lot of people do to each other at the park.

And that brings me to my next point. Being ignored is another one of my fears. For my students and my son. Because ignoring those who are different–pretending they aren’t there because their differences make us uncomfortable–is a subtle, but no less demeaning, form of discrimination. It is easy to pull off. And it is easy to justify.

“I don’t talk to anyone at the grocery store, so why would I talk to him?”

“That woman doesn’t know any different anyway.”

“Eli won’t even realize he wasn’t invited to your birthday party, honey.”

What gets lost in all of this is that no matter what challenges anyone faces, everyone longs for acceptance. We all want to belong. We all want to be part of the group. And I suppose so many of my anxieties stem from this: that someday, Eli might be the only kid in his class that doesn’t get invited to the birthday party. Someday, one of my students might be the person on the bus that no one wants to sit with. Someday, my son might be the kid that’s picked last for dodgeball or soccer or group work in class. And I promise you, he will know. And he will understand. My students know. And they understand. And it is, and will be, heartbreaking.

I was talking with someone the other day about my son moving up to the next room at his day care. Eli and Evie attend a wonderful day care center. I am thrilled with the care they get there while I’m at work. My children are really loved. Eli’s teachers work on his therapies with him even though they don’t have to, and he was welcomed there with open arms, no questions asked, and with no additional fees. When my kids started there, I was assured that Eli would transition from one classroom to the next with his same-age peers, even if he wasn’t walking, even if he wasn’t talking, even if he wasn’t potty trained. Because the people at his center understand that would be best for Eli. Because they understand that it also benefits the other kids (some people doubt this, but trust me–there is plenty of research proving it…I’ll write about it someday). Because it is the right and loving thing to do. But in this conversation about Eli’s transition to the next class, as other parents were shuffling in and out to get their kids, it hit me very suddenly and very hard: what if the other parents don’t want their kids to be around me son? I faced this as a teacher early in my career, during parent-teacher conferences when a mother literally backed me into a corner and wanted to know why her son had to be in the same class with “those retarded” kids.

And so by my own past experience and my newfound concerns about the future, my fears and anxieties are compounded. And I think I become hypersensitive to things going on around me where something similar could happen. Which is why I worry when we take our students into the community. I worry because I’m not sure how to respond if something like that does happen, and I’m not sure how I would respond. I worry because it will break their hearts. And because it will break my heart.

The truth is, someday, somewhere, someone will be mean to my son. Someone will leave him out or say something ignorant and cruel. There will always be parents that think my son will somehow affect their kids in a negative way. The challenge isn’t simply in how we respond to those situations, but also in teaching my kids to be resilient. And I’m not exactly sure how to do that yet. I see my students, who are acutely aware of being regarded as “other,” and I hear their stories of being excluded or made fun of, and my heart hurts. They don’t deserve to be treated as outcasts. They are no less human than their peers without disabilities. And their disabilities and diagnoses are not their fault.

The fact remains that Eli is different than kids without Down syndrome. He faces challenges many other people will never face. My students are different too. I teach and I write and I share because I long to see the day when that’s ok. It’s ok to have Down syndrome. Or autism. Or a learning disability. Or to be in a wheelchair. Or to be nonverbal. It’s ok. In fact, it’s more than ok. It’s normal, whatever normal is. And it is worth celebrating. People with disabilities are valued members of their families. And they are more frequently being accepted as valued members of their communities. That is reassuring and a sure sign of progress. It obviously doesn’t assuage all of my fears, but it certainly makes me hopeful that the tides are changing.

We parents (and teachers) of children with special needs have a lot of worries sometimes. We have social concerns and medical concerns, fears that get the best of us sometimes. Sometimes, this is a really rough ride. And sometimes we wonder if we’ll survive. Or if our kids will. I can’t take away the medical fears we face–a diagnosis like Down syndrome means there is an increased risk for certain medical complications. Period. (Complications that, I might add, don’t devalue our kids’ lives.) But I can, and I will, continue to try to affect the social aspect. I will continue to write and share, and I hope that you will help to spread the word that kids like my son, kids like my students, deserve to be celebrated.

Have a great weekend! We plan to!

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Sunshine and rainbows

Not all days for our family are easy. Some of them are difficult emotionally, overbooked, overwhelming, or exhausting. Sometimes I can’t wait for my head to hit my pillow at night and sometimes I wish my parents were nearby so I could ship the kids off to their house for a night while I got some sleep. In my own bed. Alone. Without a foot in my face.

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Today is one of those days. One of those overwhelming-too-much-going-on-kids-in-meltdown-mode days. My daughter is in her room crying as I type, deeply upset by the consequences she suffered after a series of unfortunate choices this evening. Apparently, not being allowed to have dessert before dinner is reason enough to tell me that she wants me to die. This is not the kind of talk she hears in this house, although I will take responsibility for participating in an argument a lively discussion and/or using inappropriate colorful language on occasion. But she is only four years old. And where on God’s green earth could she possibly get her hyperbolic dramatic flair??…

Following in his sister’s footsteps is the little brother, who has become very vocal about what he likes and doesn’t like and what he wants to do and doesn’t want to do. And in his own dramatic style, he covers his face when told “no.” As a developmental milestone, this is thrilling–he gets it, he understands what “no” means. As a parent, it is usually adorable. Unless I am already exhausted. Then it’s not so adorable.

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Ok, it’s still pretty adorable, but you know what I mean.

So today I’m exhausted. I can feel my patience wearing thin and my anxiety building. We were out the door before 7am and we got home after 6pm. After work, I took Eli to physical therapy while my sister-in-law took Evie to dance (thank you, Sara!!). I made dinner for the kids, swept the kitchen floor, packed lunches for tomorrow, put out the fires unique to preschoolers and babies, bathed my darling children, earned the rank of worst mom ever (according to my daughter), tucked in the kids, and collapsed onto my bed where I am now hiding from all the other things that demand my attention.

It feels like there are just so many. My kitchen floor desperately needs to be mopped and my living room and dining room need to be vacuumed. There are mounds of laundry to wash and almost as much clean laundry to put away. There are bills waiting to be paid and taxes waiting to be filed. I need to finish cleaning up from dinner and find something to eat myself. The dogs are ready to come in and they’re probably hungry, and I’ll have to keep my eye on them so they don’t crap in the house 🙂 (they seem to be fond of doing that when my husband isn’t home). There are still things to carry in from my car, I haven’t worked out yet today, and there is plenty of work I could be doing from home to catch up.

But I’m not doing any of those things. At least not at the moment. In a few minutes, I will let the dogs back in and make sure they are taken care of. Spoiled even. In a few minutes, I will finish cleaning up from dinner, think about folding some laundry, and make plans to mop the floor. Tomorrow. But now…well, now I want to take a few more minutes to reflect on my day…

I started this blog to be transparent. To share our journey. To document what it’s like to have a child with special needs. And I’ve just shared with you the nuances of a less-than-perfect day. I’ve admitted that I’m tired and anxious and cranky. I’m admitting that there aren’t enough hours in the day to accomplish everything I need to do. And now I want to be very clear about something else: it’s not because of Down syndrome. It is simply because life is hard sometimes. For everyone.

My daughter would be just as feisty if her brother had been born without Down syndrome. If my son didn’t have Down syndrome, my kitchen floor would still need to be mopped and the laundry would still be piling up and I would still insist that my children eat their dinner before their dessert. Yes, without Down syndrome, I wouldn’t have to spend time at therapy, but make no mistake–there would be something else to fill that time. Because that’s just life. I’ve been busy my whole life. The only thing that’s different now is that I have to shift my focus to my children from myself. And as a parent, I would have to do that anyway, even if my son didn’t have Down syndrome.

The truth is, I enjoy taking Eli to therapy. It’s exciting to see him progressing so well. And I enjoy watching my daughter dance. It’s fun to see her pour all that energy into something constructive. I certainly don’t enjoy mopping or doing laundry. I don’t enjoy cleaning up after the dogs or washing dishes or being exhausted. But even on these long days, these hard days, these imperfect messy days, I still love my life. And I still wouldn’t change a thing about Eli, including his diagnosis. I wouldn’t even dream of trading these days for easier therapy-free days. Because these are our days. They are our moments. And they are all at once beautiful and frustrating, exhausting and exhilarating. This might not have been the life I would have chosen for myself, had I been given a choice. But I’m so glad it’s the life that was chosen for me.

Like any other family, we face our challenges. It’s not all sunshine and rainbows. But life never is. And that’s ok. It’s really ok.

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Just look at them–of course it’s ok.

That’s “retarded.”

In the last few days, an interesting discussion about the term “retard” or “retarded” has cropped up on a Facebook page I follow. In particular, this conversation has been about how, as parents, we respond to it. I’ve learned that feelings on this are as different as people are. For my part, having been in the field of special education in one capacity or another for many years, this is something that hits particularly close to home for me. As the new parent of a child with Down syndrome, it hits even closer. I’ve read about, researched, and discussed this issue more times than I can remember. I’ve spent the better part of the past 7 years as a fierce advocate for disability rights in the public school classrooms in which I teach. Arguably, some might say my master’s degree is in “retard studies.” No matter–I love the people I teach, and I love my son.

This morning, I read an excellent article about Down syndrome, and although it was not about the “r” word directly, it did include some nuanced information that certainly applies to the “retard” discussion. I was especially taken with this statement, and I made an immediate connection to the aforementioned Facebook discussion: “…it is perverse to assert that the appropriate treatment for this form of suffering is that the stigmatised rather than the stigmatisers are the people who should be made to change their fundamental identity.” I agree emphatically–perverse is an excellent way to describe the idea that the stigmatized should change rather than those doing the stigmatizing.

Earlier, I used the term “fierce” to describe my advocacy style. That might seem harsh. It might sound unnecessary. And I will tell you that for the most part, public schools are great places. But I will also tell you that disability rights are civil rights. They are human rights. And when it comes to stigmatizing my students–and now, my child–I respond fiercely if I have to. Sometimes, I’m the only advocate my students have, and nothing less than fierce will do. I see on a regular basis how deflated my students become when called “the retards.” Having Eli has, of course, made this an even more poignant issue, as he will likely be on the receiving end of that one day. Does my son have delays and challenges, including cognitive ones? Yes. Is he a “retard?” No. The same applies to my students.

Once, when a student walked by my class, pointed, and shouted, “It’s the retard class!” I invited him in and asked him if he would like to say that to their faces. This was long before Eli was born, and some of my friends might remember when I posted about this a few years ago. This young man was stunned by my reaction, but not quite as stunned as my students in first hearing his taunts. I will never forget ushering him into my classroom and telling him to look at them and call them “retards” to their faces. He froze. But my students didn’t. In what was a very proud moment for me as a teacher, they said exactly what was on their minds. They told him what they thought, how they felt–they advocated for themselves, and that is something we work so hard on in the program I teach. I know my students in a way many others in our society wouldn’t care to know them. Yes, I know what they look like in terms of percentile ranks and norm-referenced assessments. But I also know them as individuals. I spend all day with these young people. I get to know what makes them tick, what makes them who they are at their core, what makes them wonderful and lovable and amazing. And in what is perhaps one of the grandest paradoxes I’ve ever known, it’s all wrapped up, inexplicably, in what also makes them “retarded.” But they are not defined by that either. Sigh. There are so many layers.

And so, when the word “retard” is thrown around as an insult, I cringe. I shudder. I get angry. Because my students are not bad because of their disabilities. Because my son is not bad and because Down syndrome is not bad. But every time someone uses that term to put someone or something down, it implies that they are, that he is. And so many people have worked for a really long time to end the stigmatization.

In my job, I work very closely with families too. And I want to share a story related to me just a couple of days ago by a parent I really respect and look to as a mentor as I learn to navigate these waters now as a parent. This woman has a son with a disability. He is an adult now and he does very well for himself, working competitively in the community. He enjoys his job, and I know his parents are quite proud of the young man he’s become. On one particular afternoon, his mother arrived at his place of business because she needed to purchase a few items, items that would need to be loaded into her vehicle. As it happened, that was her son’s job that day. She maintained an unassuming position in the line of vehicles that day, not wanting to give away to anyone else that the employee’s mother was waiting for the same service the other patrons were there for. It was a busy day. Her son was working hard, loading cars as quickly as he could. But, inevitably, as folks in line tend to do, someone grew impatient. In this case, very impatient. A woman, tired of waiting, got out of her car, turned to the other customers (obviously unaware his mother was in line), and yelled, “I hope you’re not in a hurry. They’ve got some retarded kid working and he’s not moving very fast.”

This is why I am passionate about advocating for my students and for my son. This is why I get fierce. This is why I say there is no accounting for ignorance. This is why I say, whether or not his mother had been in line, this type of discriminatory tongue-wagging is simply not ok. It’s not ok, people. It’s not ok. Up to that point, this young man was just that–a young man doing his job. Some people might have noticed his disability, but it wasn’t about his disability. Once this woman opened her mouth, it was all about his disability–he was no longer just a young man doing his job; he was a young man with a disability doing his job. Even more than that, he was the “retarded” young man doing his job. I read a comment from another mom that really made sense–we don’t want every conversation about our child to be about our child’s disability. Exactly. That’s all the more reason for us to take a stand against discriminatory speech–it focuses so heavily on the disability when we know, without a doubt, that our kids, that my students, that persons with disabilities are so much more than their disabilities. And it is never ever ever the responsibility for those that are stigmatized to make up for the shortcomings of those doing the stigmatizing. But it is ok for us to take a stand. As parents. As teachers. As friends and allies of those with disabilities. As those who know that differently-abled doesn’t mean bad. Words can hurt or words can heal. Enough is enough. Our kids deserve better.

On milestones

So not that long ago, I was having one of those “poor me” moments. Well, that’s not quite right. It was more like a “poor Eli” moment. I wasn’t able to go to Eli’s evaluation at the Thomas Center (Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center, that is) in October or September (it all runs together now), so I had only my husband’s interpretation to go by. He doesn’t speak therapy (as in physical, occupational, and speech) language, so I was quite frustrated at my lack of understanding about the appointment and that I was left to reinterpret his interpretations of their interpretations. Geesh. My interpretations of his interpretations of their interpretations had me worried for my son. And confused. Because how could it be possible that when I look at him, I see only perfection and PURE JOY, but when these people look at him they see percentile ranks and deficits and challenges? And then I got the written report in the mail. Finally, I could see their interpretations in a language I speak. Finally, I would not have to decipher husband-language to figure out how my son was developing. It would have been less painful for someone to hold me back while someone else, with very large biceps and a powerful fist, punched me in the gut over and over again. It was about what my interpretations of his interpretations of their interpretations said it would be. Sometimes I hate being right. I shed a few tears, texted and emailed a few of my fellow Ds moms, and posted on a couple of message boards. I don’t disagree with the report, I explained. (Shit, I was hoping to disagree with the report.) It’s just so different being on the receiving end of one of these. (You know, since usually I’m sharing my reports with parents.) I picked myself up with the support of those Ds moms I’ve come to rely on, and decided to carry on for Eli’s sake. Because when I look at him, he is still that perfection and pure joy that he’s always been to me, no matter the percentile rank of his expressive language skills. And I thought to myself that he started nursing finally at 4 months old. Four. Months. Old. If he could learn to breastfeed at 4 months old, he can do anything. He might be 4 months behind, but eventually we get to a point in life when 4 months is no big deal. And so we carried on.

And then, as my son is apt to do, he blew me out of the water. Out of the water. He decided to remind me, in his way, just how capable he is. Do you know what he did? Can you guess? He started signing spontaneously. He’d been able to mimic a few signs, but he had never signed without being prompted. But then, one day, he started signing on his own and in context. He signed more and milk and mama. He signed eat and all done (or all finished, if you prefer). He signed like he’s always been signing. Like he’s signed since birth. I jumped and screamed and scared the crap out of him with my cheering. And then I slowed down. What if he doesn’t know what these signs mean? I remained cautiously optimistic. And then he started signing at school. His teachers started asking me what different signs meant. One day, when I picked him up, his teacher had to wake him up from his nap. He started signing for milk right away. She didn’t think he could possibly want milk–he’d just had some before his nap. But he kept signing it, so she gave him a sippy cup. And he sucked it down. Sucked. It. Down. He signs milk when he’s eating and wants a drink, when he’s having a sippy cup, and when I’m nursing him. This kid knows what he’s signing. Another day, I walked out of the living room, leaving him to play for a few minutes by himself. My husband walked into the room before I returned, and he found Eli signing mama. He continued to sign for me until I came back into the room. His teachers have also reported that he signs for me sometimes during the school day. Bless my sweet boy’s heart, he loves his mommy. He signs eat all. day. long. according to one teacher. 🙂 He takes after me too. If there is one thing I know now, it’s that my little man has the cognitive capacity to “get it.” And he will get it in his own time. And when he does, he’ll make me feel silly for ever worrying.

Last week, Eli had his first regularly-scheduled physical therapy appointment. Once again, he surpassed expectations. Mine and the therapist’s. He did some things she didn’t think he would be able to do yet, especially after that evaluation just a few weeks earlier. I suppose he showed us that a lot can happen in a few weeks. He is such a fighter. And (did I mention?) pure joy.

I want the world to know that managing all of this–the evaluations, the therapies, the challenges and delays–is, well, manageable. I want families just getting a diagnosis to know that they can do it. That it’s really not a big deal, even if it sounds like it is. I want families getting a prenatal diagnosis to know that they can do this, that their child’s life will be so worth it. That having a child with Down syndrome is so worth it. There are challenges–that is an undeniable fact of parenting a child with a disability. But that is also an indisputable fact of parenting a child without a disability. I think about how my daughter developed so normally. Ahead of the curve, even. I think about taking her crawling and talking and nursing for granted. How they just happened, without much thought or regard for the complicated mental processes needed to perform such tasks. And then I think about my son. How purposeful we’ve had to be about each milestone. How focused. How determined. He has to work so much harder to reach the same milestones, to do the things that babies without Down syndrome do so easily. But when he does it, the feeling of victory is so sweet. I appreciate it in a much deeper and more profound way. It means more to me now because I actually have to think about it. And it makes me think back on my daughter’s milestones and appreciate those more too.

Sometimes I get overwhelmed with this life. Sometimes I worry. But I got overwhelmed and I worried before Eli was born. I wouldn’t change it. We’re almost one year in now and I would not change it. I love my son. Just the way he is. Because of who he is. Not in spite of it. For video clips from Eli’s physical therapy at home, find us on Facebook. (I was going to upload them here, but WordPress wants $60.)

It’s Been a While

Since my last post in August, I’ve started five new posts (not including this one). I’ve finished zero. It’s November 1st, and I’ve fallen asleep or abandoned every new post in the past few months. If there is one lesson the universe wants to be sure I know, it’s that I’m not Superwoman and I am not capable of doing everything. For my part, I have a really hard time accepting this. I know it. I admit it. But I don’t accept it very readily.

Over the last few months, our family has endured another hospitalization and Eli has been stay-home-from-school sick at least 3 times. (By school, I mean daycare.) The afternoon I picked him up to find out that he’d had three seizures was, thinking back on it, pretty surreal. I walked into his classroom expecting to take my kids to a friend’s house for a low-key evening and I left trying to keep my wits about me while rushing my son–with my daughter in tow–to the CCHMC emergency room. I had phone calls to make and I didn’t want to panic. Oh, and there was that whole driving thing. At rush hour. In a city that has some of the worst drivers anywhere. My husband rushed from the firehouse to meet us.

That evening in the ED was a long one. We entertained our hungry preschooler (who just didn’t understand why we had to go back to “Children’s Hostibal”) as best we could and tried to appease her with the wholesome vending machine treats. When my husband finally left with her at 11:00, Eli and I snuggled in together on a gurney. John and Evie headed to the firehouse to retrieve my husband’s things and we met them at home a while later. The hospitalization followed the next week (and thankfully only lasted a couple of days), and my mother came to stay with Evie so John and I could be at the hospital. After being hooked up to monitors for 2 days, Eli was found not to have a seizure disorder (thank God!), and we were sent home. Not sure what was going on, although the neurologists were quick to blame reflux. One of his nurses wasn’t convinced and I captured several of the events on video. Even Eli’s PCP thought they looked like partial complex seizures. But, thankfully, increasing his ranitidine means he hasn’t had any episodes since then. I guess those neurologists are pretty smart after all. How ’bout that? Throw in a stomach virus twice, two double ear infections, and thrush and my little guy had had a rough few months. You’d never know it though–he is so full of light. He was even happy with electrodes on his head.

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During the last few months I’ve taken time off work–even though I exhausted my sick time last year–to take care of my kids when the bugs hit. My husband has done the same. It’s meant going without overtime pay, and in some cases, going without pay, period, but that doesn’t seem to be so important when your kids aren’t well.

During these months, I’ve wasted countless morning minutes to scrambling for socks for my kids when we have not a minute to spare to get out the door. I’ve done the same thing packing lunches, looking for car keys, and trying to find jackets. In those moments I admonish myself–if I had just put the baskets of clean laundry away, I would have the stupid socks. If I had just packed lunches and planned outfits the night before, like we do most nights, I wouldn’t be in an anxiety-fueled frenzy trying to get my little ones out the door. And it’s hard on them, getting up so early. Bedtime in my house is around 7pm and they get up at 6am. But, of course, there have been too many nights over these past few months where we just didn’t make bedtime. And we paid for it the next morning in the form of preschool meltdowns. Don’t you know that black is an ugly color and preschoolers forces to wear black coats will cry because black is not pink? And of course having to brush your teeth before putting on your shoes is nothing short of tragic. Pick your battles, Stephanie, pick your battles. During these last few months, I’ve threatened to take my daughter to school in her pajamas or without shoes or with “stinky teeth.” I’ve hurried her along while her brother gets carted around happily, not bothered by much unless he’s hungry. I’ve felt guilty all the while knowing that I shouldn’t be hurrying my kids so much, wondering how I can possibly slow down with them and enjoy them for those few minutes we have together in the morning before we go out to take on the world. Yes, if I had just put away that laundry. And packed those lunches the night before.

During these last few months, I’ve started Weight Watchers. Again. And failed. Again. Struggled. Again. And tries again. Again. I’ve spent a lot of time trying to figure out how it is that I’ve managed some pretty impressive weight loss feats in the past, but this time is so impossible. I’ve determined that damn it, I’m hungry. And stressed. And carrots will never satisfy that lethal combination. At least not for me. I’ve tried to build more exercise into my routine and I’ve failed at that too. I get up at 4am with gusto ready to work out. Once. And then sleep trumps exercise every time. I make it to the gym regularly for a few weeks and then a kid gets sick–man down, man down!–or those 7 o’clock bedtimes creep up on us (and so do the morning meltdowns) and, once again, sleep trumps exercise. And there’s that whole getting-home-at-5-and-squeezing-in-family-dinner-and-time-to-play-with-the-kids thing. Yeah, that’s pretty important to me too, especially after being away from them all day. And don’t forget the ready-to-walk-out-the-door-and-realizing-you-must-nurse-baby-now problem. Things at the gym could get really messy if you don’t. And bouncing up and down during exercise class with a chest full of milk is not for the faint of heart.

During the last few months, I’ve had arguments with my husband, and all at once resented and enjoyed the fact that he is working almost enough hours to have 2 full-time jobs. (He has 1 full-time and 3 part-time jobs–such is the life of a firefighter, I guess…) Each month, more of our money has gone to child care than to our mortgage, and I’ve had to rework the budget (more than once) to make things happen. In these few months, we squeezed in 2 date nights, and both ended in our passing out, exhausted from the week, drooling on our pillows. Sleep also trumps nooky.

During these last few months, I’ve quit bringing work home with me because it just isn’t fair to my kids to keep working in the evening after being away from them all day. I’ve brainstormed ways to stay at home, especially with so much money in child care expenses, but we just haven’t been able to get that creative with the budget yet. I’ve had days these last few months that I’ve loved my job, and days that I’ve had some real concerns about the state of education–especially special education–and what that will mean for my kids, especially Eli. (And let me tell you, my concerns have nothing to do with the teachers.) I’ve made late-night runs to the pharmacy to pick up those meds I forgot, dragged a couple of sleepy kids to the craft store to grab t-shirts (at the last minute) for the craft project at school, and made some dinners that really sucked. I’ve gone to work with wet hair (sleep trumps beauty) and mismatched sock, and accidentally sipped my coffee from a mug with coagulated milk in the bottom (that was not awesome). I’ve cleaned my house only to let the clean laundry pile up, or put away the laundry to the detriment of the dishes. I’ve scrubbed the shower while I was in it and cleaned the rest of the bathroom while my daughter played in the bubbles during bath time. At least I was in the room with her, right?

Yes, it’s been a chaotic few months. I’ve had to admit defeat on many levels. I’ve had to stop thinking of my life in terms of “If so-and-so saw my house right now, he/she would be mortified,” and “I don’t want to run into anyone I haven’t seen in a while because I’m embarrassed I’m still carrying the baby weight.” These things get to me. They really do. And I have such a hard time reconciling the perfectionist in me with the me that has a messy house sometimes and the me that hasn’t made losing the baby weight a priority and the me that jets out the door with wet hair.

And over these last few months, I have been gentler on myself than I’ve ever been. I’ve snapped out of my hard-on-myself funks more easily than I have in the past, and I’ve been a little less inclined to believe that my self-worth is determined by the degree of wetness of my hair. I’m not a failure of a woman for choosing sleep over eyeliner, and I’m not a failure of a mother for not batting an eye when my kid eats a stale cracker off the floor (how did that get there, anyway??). I have wanted to prove for so long that I can be everything and do everything and do it well. I’ve created so many contingencies for myself–it doesn’t matter that I’m a good teacher because I’m a fat good teacher. It doesn’t matter that I’m a good mom for playing with my kids in the evening because I’m still the mom with the piles of laundry to finish, dishes to do, and toys on the floor. It doesn’t matter that I’m a good wife because…well, to be honest, I’m not sure where I stand on the “good spouse scale.” But you get the point. For most of my life, I’ve set up these unrealistic, unhealthy, and anxiety-inducing expectations for myself. The funny thing is that I’ve never expected any other woman to live up to my standards. But for myself, I have this impossible set of rules. But during these last few months, I’ve started to let some of that go. I credit my kids–and Down syndrome–with that. My kids have taught me the value of patience, but not just with them. I don’t want to project my unhealthy habits on them, so I’ve worked hard to fake it. I walk a fine line between teaching my daughter that the way you present yourself does matter but you aren’t a slob if you have a few mornings without perfectly styled hair. I never want my kids to obsess over their bodies the way I have mine (that’s a post in itself), so I’ve learned to be a little gentler with myself. I walk a fine line here between teaching my kids to be healthy–to maintain a healthy weight and healthy habits–and teaching them to wrap their self-worth up in it.

I see things a differently because of my kids. I see things differently because of Down syndrome. Down syndrome has taken every experience, every emotion, and made them just a little more poignant. Patience has become a little more important. Acceptance–self-acceptance–has become a priority. I want my son, who has Down syndrome, to value himself just the way he is. I want my daughter, who doesn’t have Down syndrome, to value herself just the way she is. I have to start by valuing myself. Right here. Right now. Just the way I am. No apologies. No excuses. I have to value myself while also working to better myself. But instead of focusing only on the end result, I’m learning to value the journey.

There is order in chaos, right? So somewhere, in this hectic life of mine, things make sense. 🙂 I’m working on that. In the meantime, here are a few of my favorite snapshots from the last few months.

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