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.)
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??
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
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.) 😉