"Trisomy 21"

Last year for World Down Syndrome Day, I posted here about my dad's song "Trisomy 21". Well, it's a few days after World Down Syndrome Day (YouTube was not cooperating with getting it up in time for 3-21), but he has made a video for the song and I wanted to share it. He has used pictures of Nathan to illustrate the beautiful song he wrote after Nathan was born.

playing dress up

It seems like Cianna is growing by leaps and bounds. It's bittersweet; my newborn is already gone. I marvel at how big she's gotten and how strong, though.

Being a preemie, Nathan was so small that every ounce gained was something to rejoice, and there was not the sense of sadness about leaving that smallness behind. Babies outside the womb are not supposed to be that small. Cianna was never scary-small, but already she is not as small as she once was. In fact, after two months of wearing nothing but jammies with feet, I've been dressing her up in her little 0-3 month and 3 month size outfits, so that she can wear them once before she outgrows them. The newborn stuff has already been outgrown and now it looks like the 3-6 month sized outfits will make an appearance very soon!

Here are some pictures in clothes that may not get much more wearing:

Tiny hands and feet

I finally was able to get Cianna's handprint and footprint. I tried after we came home from the hospital, but she curled up her hand. It seemed messy and impossible. At 7 1/2 weeks, in the bath, after a few nights of trying, I got the handprint! The foot turned out to be easy by comparison.

Five years ago it took me 2 months to get Nathan's. During that month in the hospital, I figured it would be wrong to bring in an ink pad and mess around when they were busy with the more important business of saving his life and growing him big enough to come home. Once we got him home, he seemed so fragile, and handprints seemed trivial. It took me a while to work up to trying. He was asleep and totally passive. Getting the print was so easy I got several more and made cards for his grandparents. Then I washed off his hand and foot while he slept on.

Now I've got these prints, hanging on the wall, side by side, taken at very similar ages. The contrast amazes me, Nathan's little hand, with his transverse palmar crease so clear, is so tiny compared to his sister's. Hers just looks stronger, more forceful, less fragile.

And this is just one of many things that will be different. It's kind of bittersweet, brings back my memories of a tiny Nathan and makes me realize how fast Cianna is growing and developing, how different her trajectory is. Part of me wants to keep both of them tiny, to freeze those moments, and part of me wants to see the growth and development unfold.

Cianna bread

Nathan joke for today: I was saying his sister's name and he said "Cianna bread". Yeah, guess it does rhyme with banana!

Thoughts on Kindergarten placement

Nathan turned 5 just over a week ago. I've thought for a while that perhaps he's not quite ready for kindergarten. My thought had been to do an extra year of preschool and then, since we live in an inclusion-oriented district, be more ready to be fully included in kindergarten. Since he will be 5 1/2 in the fall, the staff at the preschool let me know that they really recommend starting kindergarten and not waiting.

We had Nathan's IEP in February. He made some progress on his goals but did not meet them. I don't think he made as much progress on the goals as anyone would have liked. I was in agreement with the assessments of his progress and with the new goals proposed by the team. I was upset, though, when the school psychologist told me that they really recommended a special day class for Nathan for kindergarten. I knew that our district has had a special day class for a couple of years now, and that they do recommend this for some students. I didn't think my child was "some students", though. I thought that an inclusion environment would provide better peer modelling for Nathan. I also have often heard that inclusion is best for our kids. I agreed to visit the special day class but I let them know I wanted to visit a regular kindergarten too. Yesterday, his preschool teacher and I visited both.

I've been wrestling with a lot of emotions that come up for me around this issue. I was really upset to realize that my child is one of the few in the district for whom they would recommend this kind of educational program. It made me see Nathan in a different light and it made me sad. I want to see him with his typically developing peers, doing well, doing a modified version of what they are doing... and yet I also see now, after a lot of reflection, that Nathan truly is not yet doing what his typical peers are doing, and it takes a lot to motivate him to even try a modified version of such things. Typical kindergarteners, as I saw today, are moving in little groups through centers, doing tabletop activities. They need to be willing to go to and move through those centers, even if they were going to be doing a modified version of the activity. Nathan does not like the activity centers at preschool, they are constantly challenged to motivate him to participate in the tabletop activities. They report that he does pinch or try to bite staff as they try to get him to do these things. Typical kindergarten classes in our district will have as many as 30 children next year. Even with a 1:1 aid, that's a lot of kids in the room, a lot of stimuli. At his current daycare, where he is fully included, with up to 24 kids in the pre-k, it can be loud and overwhelming. They have a hard time engaging him in their structured activities, and he uses much less verbal communication.

The special day class I observed today had about 7 students in grades k-2 (and this serves the whole district, several elementary schools, so they really don't recommend this to just everybody, it is not a warehouse for our special needs kids), one teacher, and 4 paraeducators. Students moved through activity centers, working on activities that targeted their individual IEP goals. The staff at each center used a variety of techniques designed to motivate each student (bubbles seemed to be a pretty popular motivator, for example). There was a lot of reinforcement for appropriate behavior and doing one's work and the staff were very knowledgeable about what might motivate each child, such as earning tokens toward a specific preferred activity.

The sdc class has kindergarteners in school 5 hours per day (and the first and second graders a full day), whereas the other kindergartens in the district are all 3 hours, morning or afternoon, so this program offers considerably more instruction time.

I was worried about the bigger kids and disruptive or aggressive behaviors. I witnessed one child having disruptive behavior, staff handling this really calmly and well, and all the other kids ignoring it and doing their work. It was clear they have been reinforced in the past for ignoring negativity and they are good at it. With so much staff and such a spacious room, things seemed well-contained and it did not seem like there was a lot of potential for aggression and injury. It's still not great peer modeling, though.

I still worry about the little inclusion time the kindergarteners have (recess and music). The teacher told me they work on inclusion gradually when the student seems ready for more time and at times when the subject matter seems to support their success. The program involves increasing inclusion time incrementally up to full inclusion by third grade. I was able to go and observe a classroom with a child who had successfully made the transition. The plan would be for Nathan to return to his home school and be fully included by third grade.

I saw one of the para educators really take the time to figure out what one if the students was asking for. She had asked for a bag, and the para asked the teacher if she'd brought a bag with her. A search of the backpack revealed no bag. Further probing somehow elicited that she wanted to make a paper bag puppet, the para found a paper bag and was able to use this as a motivator for her. I liked seeing this, because Nathan has words, lots of them, but he won't use them if he doesn't think he'll be listened to and understood. I feel like this is an environment in which they take great pains to understand and to reinforce use of communication skills. If people try this hard with Nathan, their efforts will pay off.

It's not perfect; I'd prefer to see more opportunity for appropriate peer modeling and interaction, and we can discuss this concern more at the transition iep. They also do not have an after school program on campus for the kindergarteners, so we'd still need to figure out childcare for the last few hours of the day, and hopefully find something in an inclusive environment. But I think that the amount of support, the smaller class size, and the focus on what is individually motivating for each child would really benefit Nathan right now.

I think that the iep team is making a good recommendation for Nathan, based on accurate assessments of his actual needs. I don't think they just offer this program to every child with special needs, and I don't think this is just a way to save a little money on a 1:1 aide. I think they actually know my kid and that they don't make this recommendation lightly; I know his teacher wishes she saw more kindergarten readiness and has tried to work towards that with him.

It's not what I wanted for Nathan for kindergarten, but I've got to be honest here and say that Nathan's not quite where I envisioned him being developmentally at 5. But there is no point in dwelling on that, or in comparing him to anyone else. We have to look at where he's at and what he's doing, and which environment seems to be the best fit to support him this fall. At this point it seems like that will be the special day class, working towards a goal of increased readiness for a more inclusive environment.

A little update with pictures

Both kids have seen the pediatrician this week, both growing well, both in the 50th percentile on their respective growth charts (Nathan on the Down Syndrome boys growth chart, Cianna on the chart for baby girls, weighing in at 10 pounds now). Nathan didn't do a fantastic job of cooperating with the proceedings, something I'm wanting to talk over with the behaviorist. However, we survived it, and the kids are both healthy.

Nathan turned 5 and had his 5th birthday party at the park. I completely failed to get pictures of the party since I was juggling his sister much of the time. I do have some pictures to share though.