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.